NO Tumor? - 12/21/12

I spoke with my neurosurgeon yesterday morning and he thought that what he took out was not a tumor so he sent it for specal staining. I got a phone call this afternoon from his nurse saying that he got a call from the neurosurgeon who wanted me to know before the holiday that it was not a tumor but necrosis from previous radiation. I need to talk to him as we aren't sure whet exactly that means but I know I feel SO much better! They also indicated the 2nd brain port surgery could be as soon as the day after Christmas - I opted to go with the following week so am currently scheduled to have my second surgery on the 2nd of January! They had a HARD time putting an IV in my left arm in the OR so I'm really bruised after four ultrasounds to get it - I'd like to heal a bit if they have as much trouble! I'll update as I learn more about the necrosis and my brain port surgery! Happy Holidays! I plan to enjoy it with my family. And... for those who haven't heard, Kurt and I got our Christmas present early (well we found out about it); we got plane tickets to Las Vegas at the beginning of February to hopefully see George Strait/Martin McBride along with my parents ... a dream come true in my eyes. This would be one of my bucket list items ;) I've always LOVED George Strait.., and this is his farewell tour! And the added bonus is Martina McBride!

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....

Seven Come Eleven... (or more) - 10/9/12

I decided to try to blog instead of having Kurt "guest blog".  I've been going through radiation treatments for the last several weeks.  I had an appointment yesterday with the radiation oncologist who asked me how I was feeling; I mentioned that while I knew what I wanted to say it wasn't always coming out.  The doctor asked if I wanted to go for an MRI as he was concerned that if I went through too much radiation it could do more damage to the good brain matter.

I also started the BRAF inhibitor chemo drug (Zelboraf) on Sunday - twice daily, four pills taken 12 hours apart.  (Knock on wood, I haven't felt anything from taking them....)

So, today we met with the radiation oncologist to discuss my MRI results.  He showed us comparisons from the MRI images a month ago vs. the MRI images yesterday ; where there were currently only 7 tumors a month ago, we lost count at 12 to 14.... and that's after radiation.  So, he is going to talk to my oncologist about what she wants to be the next steps (she was off today - she'll be back in the office tomorrow and hopefully we will hear)  I left there feeling nauseous, cried with Kurt, texted friends and family (didn't want to talk to people yet), took a nap, talked to my parents.  We haven't talked to the kids about it yet - but plan to tonight.

This doesn't mean that I am giving up hope or believing!  I will continue to fight... because those that love me and support me mean that much to me!!!

I also got a phone call that I will be interviewed by TV6 news on Thursday about the Brain Port surgery I had on August 8th - I have to contact my neurosurgeon's office to see if they still approve of me meeting with them with the NEW news.... I'll call tomorrow.  (I'll blog when/if I meet with them and know more of when it will air.)

(I asked Nathan today when he got home from school if my hair looked like Don King... he didn't know who Don King is - but I think it does!)

Unlucky Seven? - 9/18/2012

It's been a busy couple of days.  I found out on Friday night that my radiation treatment was scheduled for Monday (9/17) at 6 p.m.  I went to the appointment and met with the radiation oncologist; he indicated that he and the neurosurgeon went through my two MRIs... one from the day before my brain surgery (8/7) versus the one a month earlier.  I knew about one additional tumor that they were going to radiate - well, I found out that there are 5-6 areas that they need to radiate.  They planned to now do two radiation treatments.  The first one would include the area of the latest brain surgery site along with two of the tumors that have changed the most; the second radiation will include 2-3 more tumor sites (which we will do in @ two weeks).  The actual radiation is much easier with this mask - it doesn't cover my chin and mouth which is nice to be able to talk and open your mouth but still not move your head.  They originally told me it would take about 30 minutes - well, I was in the radiation room for about 2 hours.  Not sure why it was so long but glad #1 of 2 is over!

Today (9/18/2012) I met with the oncologist and she indicated that I should finish up my radiation treatments and then I can start on the BRAF-inhibitor chemo medication (Zelboraf) that I previously took for two days before they started me on the chemo med, Temodar.  So, in a couple of weeks I will start that medication.  We are hoping that this will work on the brain tumors as well as the liver/hip issues.

I also found out the results of my PET scan - liver is still the same (healing but now the same size), right hip they cannot really tell since their is so much 'trauma' to the area due to my femur/rod surgery in June; she did indicate that this scan showed some 'activity' in my left hip - she asked if I was having any pain in that area.  Boy, I sure hope I don't have issues with that hip - I'm afraid I won't be able to walk!  So, we will see what the next scan shows in regards to that area - and we'll see if the Zelboraf helps all of these issues as well.

I'm thinking I am a little 'unlucky' because of the new tumors but I also know that I have been through some major surgeries and I wasn't on any chemo.  Hopefully this chemo will decrease the tumor growth and/or get rid of the ones that are there!  (And, of course, that hopefully will happen with the radiation as well!)

Even though it's not the best news, I continue to believe!

Feeling Good with This Crazy Brain ... And a HAIRCUT - 9/11/2012

I haven't been blogging much since I've been back to work more.  The last two weeks I have been back to work and trying to o get back to more full-time status although it is a bit hard some days as I still have quite a few appointments.  This past week (last Tuesday, September 4th), the kids started their first day back to school.  I also had an appointment to see the radiation oncologist for my mask fitting.  When I woke up, I felt my brain surgery incision and found that it was 'oozing' a little blood.  I thought maybe I scratched the incision as I have been having issues with my head being itchy from what I assume is an allergy to the baby shampoo.  I contacted the radiation oncology office to let them know this was happening - he didn't want to do the mask fitting earlier as he didn't want there to be issues with my brain surgery incision.  I ended up calling the neurosurgeon's office and they asked for us to stop in before my appointment with the radiation oncologist.  I went to their office first and the PA indicated that moisture was 'seeping' out from under the dermabond glue and he removed part of the dermabond.  Part of the incision was not healed yet but it will with that glue removed.  I then went down to the radiation oncology office.  I really thought that they wouldn't do the mask fitting as I had the issue with the incision being open but they did end up doing it.  I was very anxious about it as I am claustrophobic ... I did take some meds once I knew they were going to proceed with the fitting.  It was actually a little different than the last mask and it didn't cover over my mouth and chin so I was able to open my mouth which seemed to help.  After the mask was fit, they did a CT scan on the radiation table and then I was able to go.  They said they would map out the radiation by combining my latest MRI with the CT scan and then would contact me to schedule the one-time radiation treatment.  (I still haven't heard when the appointment will be.)

I received a call from the neurosurgeon's office last Wednesday (Sept. 5th) that I needed to have another MRI.  I didn't get in touch with them until Friday and we scheduled the MRI for Monday morning.  We then had an surgery follow-up appointment with the neurosurgeon afterwards.  He gave me the following MRI pictures to show that there are two tumors that I will have radiated as well as the area of where my surgery is.  (As you can, the tumors have gotten bigger - I haven't had any chemo or treatment since May other than the surgery.)

They will now use both the CT scan and latest MRI to map the radiation and should be within the next week I'd guess.  The neurosurgeon indicated they have now done 4 surgeries - possibly a 5th is coming up soon.  I am very grateful that there is another option to remove the tumors.  I can't believe that they could do surgery on your brain and it really didn't feel like I had any surgery!  I thank them for making new advancements in medical miracles every day!

Tonight I saw my friend, Casey, who happens to cut my hair.  If you haven't seen me, my hair has been CRAZY ... its growing back pretty fast in the back where they shaved it for the surgery (into a 'reverse mohawk'); I've also let the areas that had the "life savers" grow back a bit.  It's just one of those things that is going to take time - but it will grow.  I also must say that it really bothered my Dad the one day I was shopping with him in Target and he saw some lady LAUGH when I walked by her.  I didn't see it but it wouldn't have affected me as much as him as I've seen it a lot.  It makes me realize how to react (or not react) to people with differences!  I don't know how I acted towards people before but I know now how to NOT react.  Quite honestly, someone asked me how to react ... and I can't answer that.  But I will say that a smile (not laughing) is enough for me - and, of course, I'd rather someone ask me what happened than stare!

The next step will be to see my oncologist on Tuesday, September 18th and I hope to figure out what our next step is as well as find out the results of my PET scan which was done at the end of August.  I will update my blog as I know more...

I continue to believe!

Update 20 Days Post-Op (A Flash Drive, Some Travels, Similar Situations, Being 'Itchy' (and Maybe A Little 'Bitchy'), Work & More Appointments) - 08/28/2012

I can't believe it's been 10 days since I've last blogged - a lot has been going on.  I have been back to work on a limited basis - trying to work more and more; last week I did not work for three days but this week I am planning to work more.

To update on my hip/femur & brain surgery:  I truly wouldn't even realize that I had brain surgery.  I have been feeling good... maybe a little more tired - but doing good.  I received a call from my neurosurgeon's office last week asking if I would willing to be interviewed regarding my surgery.  I believe that the nurse said a local agency (can't remember if it was the paper or the news) as well as a company out of Indianapolis did interviews with all of the doctors that were part of my surgery and they would like to interview me.  He said he would contact them and then they could contact me directly.

The neurosurgeon's nurse also gave me gave me the names of the people involved in my surgery - one of which was the neurosurgeon from Canada who came up with and trained my neurosurgeon on this new surgery.  I was able to google his name and learn a lot about him - the fact that he wanted to be a neurosurgeon at a young age due to his mother having a tumor and what he has accomplished at such a young age is amazing!  It also spoke of his dad teaching him to work on mechanics with his left hand so he was able to perform surgeries with that hand.

They also provided us with an edited version of my surgery on a flash drive.  Ashley and I watched it - pretty cool to see, although I do have to say that it was a little weird thinking "that's my brain"!  They have come up with another amazing way to get tumors out and I am glad to be a part of the process.  (If there is anyone who is interested in viewing the video, I am willing to share with you; just let me know!)

This led me to thinking about when I first found out about having Stage IV melanoma ... I said there had to be a reason and that I hoped that in some way (some day) I could help someone else.  I hope that these blogs, surgeries, radiation, meds, etc and how I react to them help with teaching and learning.  I have some ideas of ways I want to get more word out about skin cancer, melanoma and cancer in general... it's just how to do this.  I am not sure how to start the process but wonder if I need to get more vocal with legislation/government officials regarding melanoma; I am in the beginning stages of planning ways to raise funds for melanoma research (and already received my first 'anonymous' donation); I want to be an advocate to people who are going through similar situations.  If anyone has any suggestions/ideas, please feel free to email me directly at ballz49866@gmail.com

Speaking of similar situations... Kurt and I met a couple while waiting to have my last MRI and the husband has been through a VERY similar situation as I have.  We didn't get their names or information but were able to ask the neurosurgeon's office to try to connect us.  We'd left each other a couple of messages but I finally connected via phone last weekend.  We both had the option of this brain surgery vs. radiation - I opted for the surgery and he opted for radiation.  He is already done with radiation and is waiting for the next step in the process.  I told him about my surgery, that I will be having radiation in the next couple of weeks and then will be seeing my oncologist for the next step.  I found out during our conversation that he also had some issues with a joint - he had a knee replacement - which I find interesting since I was complaining of hip pain for a few years prior to finding out about having metastatic melanoma.  Both of our areas were confirmed as areas with melanoma tumors.  It makes me want to get word out to people who have been diagnosed with skin cancer (melanoma) to make sure that they advocate for themselves and get further testing.  (That's the part of this process where I want to get more information out to legislation, possibly doctors, etc.)  As I do more on this, I will update on my blog!

Finally, today I had a PET scan.  I won't get results (I don't think) until I see my oncologist on Sept 18th.  In the meantime, I will be seeing the radiation oncologist on Sept 4th to get my mask made and then either later that week or the following week, I will have my one-day radiation.  I will also see my neurosurgeon on Sept 10th.

Next, some of the fun things that have happened... Kurt and I went to the Tundra in Green Bay overnight last week with my parents, my brother and his three kids and our kids.  They got to swim, go tubing, etc.  The next day we all went school clothes shopping in Appleton.  Kurt, the kids and I then met up with my cousin, Laurie, and her family (Bob, Kayla and Addy) to continue on to Gurnee/Waukegan, IL (just happens to be an area that my dad lived for quite awhile when he was younger).  Laurie and I grew up with vacations to Six Flags Great America and they had planned on going so I asked if we could go with them.  Last Friday we spent the 90+ degree day there.  Since it was a lot of walking, I did end up renting a motorized wheelchair to get around after walking for quite awhile.  It was A LOT of fun and I hope we can go back next summer!  On the way home we did a little more shopping!

I have been weaning off some of my meds and starting to sleep better at night which is good.  I also don't feel as hungry all the time.  It's a good thing because I have been gaining weight, retaining water and been 'puffy'.  I went shopping yesterday for some new (and bigger) work clothes as nothing fits anymore.  I also am wondering if I am having some allergies to the baby shampoo I've been using - my head is really itchy so I quit using that kind.  Today I woke up and my eyelids were swollen - my eyes have been watering so if this continues I will probably have to make an appointment to see my doctor.

Other than that, we are just gearing up for the kids to start school again next week (Nathan starts 7th and Ashley starts 4th grade) and getting back to some sort of routine/schedule!

Update 10 Days Post-Op - 8/18/2012

It's hard to believe that it's been 10 days already since my last surgery.  While I have been tired and not sleeping on the right schedule (I think due to the increase in meds after surgery), I truly feel like nothing is different after the brain surgery.  It's amazing that they performed brain surgery, removed my skull and the tumor and I don't feel like anything is really different.  Kurt told me they said that they removed the tumor in 3 minutes and that they got 100% of it; I will still have radiation on that area as well as another potential tumor. I have pictures of my CRAZY hair - I have a reverse mohawk - the tumor was removed from the back of my head so they shaved my head in the back (my free MGH haircut); I also have shaved areas off my head where the 'live savers' were put on.  And, the crazy part of all of this... there are NO staples or stitches!  JUST GLUE!


Yesterday (Friday, August 19), we met with my radiation oncologist.  Due to the area of where the incision is and that there are no staples/sutures, he would like to wait a couple of weeks to start the planning and do the radiation.  He said he would like the area to heal a bit so that it has less chance of problems due to being on the radiation table and where it is located, etc.  So, I will be going in on Tuesday, September 4th to have my next mask made (ugh - I don't look forward to it but know that it will be a brief time and I will be okay).  They will then schedule me for later that week or the following week to have one-time radiation on the areas that they map out between the time the mask is made and radiation.  Basically, I will go in, they will connect me again to the mask and table and radiation will be done to the area(s) once.  I've already warned them that I will be sedating myself as I am claustrophobic and am already anxious about having the mask on and being constricted.  But, I also am grateful that I do not have to have the halo put on so I know it will be all be okay.

Yesterday, I was also finally able to connect with the doctor's office at Mayo regarding the hip issue.  They were able to view my xrays from both the day of surgery as well as the ones that were taken a few days prior to that.  They indicated that while it is not common to happen, some times when you do these surgeries there is calcification that builds up and there is a medical term for it.  Some people have issues with it - me being one of them - but most don't.  Some complain of pain; others have no pain.  I've been doing okay now... my hip/femur area is a bit tender/sore but it doesn't hurt like it did that day.  Again, it is now just a matter of letting it heal and not stressing it out too much.  (So, basically, I went back to where I started from right after the femur surgery.)  I feel like I have been going one step forward and two steps back but I was very relieved to hear that I didn't break my hip and that the Mayo doctor seemed to think everything looked great in regards to the rod/femur surgery.

Tomorrow (Sunday, August 19th), I am going to see if Kurt and/or Ashley will shave/cut my hair to even it out some.... but not take my hair off totally.  It's just starting to grow back - funny how many people talk about how curly it is (and a little gray).  :)

Here are pictures that I thought I would share:

This is the back of my head ('the reverse mohawk');  the incision/glue is the part on the right and the left I believe is just  where they wrote with marker.

This picture shows a little more of the CRAZY hair all over...
and  the hole in my forehead where I believe they put the GPS system.

Thought I would share a few of the pictures that I took of my left arm and the bruising that I have; this was taken 9 days post-op and looks a lot worse in person but doesn't hurt.  (This is the outside view of my left arm/elbow!)

 (This is the inside view of my left arm/elbow!)

Kurt had this picture on his phone -
shows what I looked like when  I was either in ICU on  Wednesday or 8th Floor on Thursday?!?!

Home & Resting - 8/10/2012

I got home today at @11:30ish.  I believe I was held a day longer in ICU and 8th floor due to the issue I had with my hip on surgery day but I was able to get a good night sleep last night so that was good.  For those who may not have heard, the day before I had surgery I had to have an MRI and they gave me a different med than usual and when I went in the car, I put the seat back alittle bit and slept while Kurt and Ashley did some errands.  When I got home, I left the seat back and came in the house and went to sleep.  Well, when I went in the car the morning of surgery, I got in, sat up a bit to move the back of the chair up and felt a 'crack' in my right hip and then EXTREME pain.  Kurt was putting out the garbage and when he got in the car, I told him I thought I broke my hip.  Well, we ended up going to the hospital but letting the nurses know right away what was going on.  Those that know me (which seems like quite a few of the nurses and other staff), knew that I don't normally complain of my pain and I was in some pretty good pain.  When I went downstairs into the IV area, they did a couple of x-rays and the orthopedic doctor reviewed them.  It appears that I pulled the muscle from my femur and I will just have to take it easy and let it heal on its own.  I asked if they could forward the xrays to the doctor that performed my surgery at Mayo Clinic so I will plan to contact him for his opinion.

The surgery appeared to go very well.  From what I understand, in the three weeks the tumor went from the size of a pea to the size of a cherry; there was also another small tumor that was not there previously. There were 4 doctors involved in the surgery... my neurosurgeon from Marquette performed the surgery; two doctors from Canada were there (and apparently as I was coming to, the one that my neurosurgeon trained under came in and asked me if I thought he was ugly - which I don't recall how he really looked but I don't believe he was ugly; the other two I don't really recall but I believe one was another that is trained and from California.  They were able to get 100% of the tumor - Kurt said removal of the actual tumor took them all of 3 minutes. 

I had a CAT scan the night of surgery (wasn't too pleasant moving due to hip issues so I took pain meds when I returned to my room).  I had an MRI the following morning and moved to the 8th floor later that evening.  I think I could  have went home that day had I not had the issues with my hip.  Today I was discharged by 11 a.m. having no real issues.

I will be meeting with the radiation oncologist next Friday afternoon to plan my one-time treatment.  They will be doing radiation on the area of the surgery site of tumor as well as another tumor that is now showing. After that, I will then see the neurosurgeon again as well as the oncologist to figure out my next round of meds.  (I have to wonder if that is why my tumors have grown a bit since I haven't been on any treatment since May?!?!)

I am a little tired but otherwise feeling good.  I was told today that I should be off work ... we will see when I can return.  I am almost certain that the hip issue has put a different twist on the timeframe they originally gave me.  Plus, having had surgery, they increased my meds; I am decreasing daily but it will still take a couple of weeks to get back to where I was before surgery - and these meds can make you alittle off.

I will update as I know more of what is going on in the next few weeks...   Thank you for your thoughts, prayers and believing!

Life Savers? - 8/7/2012

Today Kurt and I met with the nurse, 2 PAs and neurosurgeon regarding my upcoming surgery tomorrow.  One of the PAs went through medical history (and indicated she couldn't find anything wrong with me - which I quickly told her to talk to Kurt about that!); the other PA shaved hair off parts of my head and then put these small white circular 'foamy' sticky things on (they look like spearmint/peppermint life savers).  In fact, they had figured that out prior to our arrival and brought in a head with a brain sticking out and had tape on that head where they figured to put the 'life savers' - sortof funny to see how much work really goes into planning all of this!  I was told I would then go down for an MRI; the 'life savers' would show up in the MRI and then the doctors would use that to map out the surgery along with using the GPS tracking for the surgery.  The 'life savers' should remain on until I am in surgery - it's kindof funny looking but as I thought about it today, I decided that it made sense to call them "LIFE SAVERS" as they not only look like that BUT they are part of a surgery that is potentially a 'life saver'. 

This is a picture of my head with a few of the 'life savers' on them.  :)
(Check out that crazy 'mop' - alittle more hair each day ...
and not sure if it would change but I've been told it really looks gray in the area with little hair above my nose)

After meeting with the staff from the neurosurgeon's office, I went for my MRI.  I am VERY claustrophic and hadn't brought the meds that I normally take for the MRI so I had a prescription called in before we left the neurosurgeon's office.  I had a different med than usual (but one that I have had in the past).  After I left the MRI, I was very loopy from those meds.  I came home and slept for several hours!

I've come to know most everyone that I see at all these offices and it amazed me today how enthusiastic everyone was about this surgery and the doctor(s) performing it!  It gives me a little more peace of mind knowing that we all put our faith into this procedure and those doing it!!!!

So, tomorrow I will be at the hospital at 5:15 a.m.  They indicated that I would probably go to the holding area around 6:30-8 a.m. to get my IV hooked up, into the surgery room at @ 8 a.m. and then they would set up all the equipment and everything (the lengthy part of the surgery it sounds like).  Once surgery is done I will either go to recovery for awhile and then on to ICU or just directly to ICU.  It sounds like if everything goes the way that they anticipate, I will have an MRI on Thursday in the morning and could possibly be discharged sometime that day.  It is another craniotomy - although they do not anticipate it to be as long of an incision (@2 inches maybe) - so I will have the "Free MGH Haircut" as one of the PAs told me!  :)  I will have sutures/staples in the back of my head where the surgery will be performed.

I also want to say "I LOVE YOU" to my husband!  On the day of my surgery, it is our 14th wedding anniversary; we spent our 13th anniversary at Karmanos in Detroit.  I am SO lucky to have you in my life and you've taken the "in sickness and in health" to the extreme over the 15 months.  I'm FOREVER grateful to you for all that you do for me, Nathan and Ashley ... it definitely cannot be easy!  EU!

I've asked Kurt to take away my iPhone until he feels I am ready to blog or send emails, etc.  (For those who may have seen some of the messages I sent when I was admitted to the hospital in January, I thought it better that Kurt blog or put status updates on facebook this time!)  :)

Thank you to everyone for your thoughts, prayers, well wishes, etc.  You make it A LOT easier to keep my spirits high and BELIEVE!

I hope to be home, resting and blogging in a few days!  (I suppose I better get to bed since it is already 11:30 p.m. and I will have to get up @ 4 a.m.)  :)

Not Much NEW News - 08/01/2012

I thought I would update my blog with the little bit of news that I have.  I am scheduled to have my brain surgery next Wedneday (Aug 8th) - which just happens to be Kurt and my 14th wedding anniversary!  We will meet with the neurosurgeon again on August 7th for pre-op stuff.

I had an appointment with my oncologist yesterday (7/31).  Basically we just went through some of the many options of medications (chemo drugs, etc) that are available.  I won't start any of that until after I have the brain surgery and radiation.  In fact, I will have another PET scan at the end of August and then we will determine from there what medication route I should take.  She did talk about a 1st stage clinical trial that is going on down in Detroit currently and is showing pretty good results.  Since it is already going, I don't think I would be able to get in on it currently but that is always an option as well. 

I find some comfort in knowing that there are 'options'.  When I was diagnosed in May of 2011, there wasn't many (if any) FDA approved drug treatments specific to melanoma and now there are several.  This offers hope that they are continuously working on a cure for this devastating cancer!

In my last blog I wrote about a couple that we met while I was waiting to have my MRI.  I received a message from the man - I plan to call him this weekend to see how he is doing.  It will be nice to talk to someone who knows exactly what we are going through!

And, I'm excited to report that I have gone back to work!  Last week I did three days part-time and this week I am working the whole week but only until I get tired.  I don't want to stress my body out before surgery.  I will work Monday next week and then will be off until I am told I can go back to work after surgery.  It's been nice to be back doing something 'normal'.

If I don't blog again before my surgery, I will make sure that Kurt does a 'guest' blog when I am done with my surgery! 

I continue to believe....

Medical "History" In the Making? - 07/18/2012

On Monday (7/16), Kurt and I met with my neurosurgeon to discuss options for the new brain tumor.  He indicated that there is a newly FDA approved surgery for brain tumors that are deeper in the brain; previously, the only option for these tumors was radiation.  He is one of three doctors in the United States to be trained in this procedure that has been being done in Canada.  We were told that this surgery would provide a greater chance of getting the majority of tumor out and then I would have the stereotactic radiation which could 'zap' any cells that might have been missed by the surgery.  The doctor told us to think about what I wanted to do and let him know.  I ended up leaving his office and having another MRI - this would help map the surgery and/or the radiation anyway.

While in the waiting room at the MRI area, Kurt and I started to talk to a woman who was there waiting for her husband.  We found out that her husband was also diagnosed with melanoma in 2006 and has been fighting metastatic melanoma for approximately two years.  (He also has brain METS, tumors in other areas of his body as well as knee replacement due to tumor deteriation of that area from melanoma.)  I went in for my MRI but Kurt was able to talk to them for the majority of the time I was in.  We did not get their names or information on how to contact them - after discussing this further, Kurt talked to my neurosurgeon about giving them our names and contact information so that we could stay in touch as our medical history is so similar.  Our neurosurgeon's office will be in touch with them - hopefully we will be able to get back in touch with them and continue to share our experiences with each other!

On Wednesday morning (7/18), I received a call from the neurosurgeon's nurse to see if I had decided what I wanted to do regarding the surgery.  I let him know that I was leaning towards the surgery - I figure it is the greatest chances of getting all of the tumor cells.  He said he would start the scheduling process and would be in touch.  Kurt and I then met with my radiation oncologist to discuss the stereotactic radiation.  All three of my doctors have been in touch with each other and it sounded like all thought it would be a great option for me to have the surgery and then radiation.  I was asked to go and see the neurosurgeon again after my appointment with the radiation oncologist. 

We also found out new information from the radiation oncology office regarding stereotactic radiation.  In the past, the process would be a day-long procedure were they would put a halo on your head, map the radiation during the day and then do the one-time radiation to that area.  Now, they have a new machine and are able to do it using the mask like I previously had for the full-brain radiation.  A few weeks after the brain surgery, they will have me come in and make a new mask; they will map out the radiation over the next few days and then I will go in at the end of the day and have the one-time radiation.  While I did not enjoy having the mask, it is much better than having a halo put on again.

After the radiation appointment, we met with the neurosurgeon again.  He spoke with the doctor from Canada that he has been training under about my case and he also thought I was a good candidate for this surgery.  We found out that there are only three doctors in the United States that are trained in this surgery (my neurosurgeon at MGH, a doctor at John's Hopkins and another doctor); we also found out that since FDA approval in the U.S., there has been only one surgery performed .... and it just happens it was performed in Marquette by my neurosurgeon.  The doctor from Canada assisted in the surgery as well.  So, basically... I will be the 2nd person in the United States to have this surgery!  The neurosurgeon showed us the instruments they use for the surgery and we watched a video of a simulation surgery they did on a piece of clear gelatin (the 'brain') and a grape (the 'tumor').  Amazing what they could do to get the 'tumor' out!  It appears that the recovery time is minimal - sounds like I will go to ICU for one day and then should be able to possibly go home after an MRI the following day.  We will be scheduling this surgery within the next few weeks - the neurosurgeon will coordinate his schedule with the Canadian doctor's schedule so he can be here to assist again.  (They are thinking it will be either August 7th or 8th but not yet positive on the date.) 

We did find out that my tumor is small.  It is in the back of my head and the area it could affect is my left vision.  I have to go and have some more extensive vision testing done prior to surgery. 

Since I won't be having surgery for a couple of weeks, I called my boss to see if I could go back to work on a part-time basis for the few weeks before surgery; I will also try to work part-time as I am able after surgery and with radiation.  I will be going back to work for a few days next week!  I am looking forward to it!

I will blog again as I find out more information about the upcoming surgery.  I was asked if I am nervous about the surgery... I am sure as the day draws closer, I will be; I am more 'excited' to be able to be a part of history and learning! 

And, I continue to believe!

A Little Bump In the Road - 7/9/2012

I haven't blogged in awhile and, while I haven't been doing much, a lot has been happening.

I will start with my oncology appointment today.  I had my 3 month MRI and PET scan last Tuesday.  All of us spent a few days in Gwinn for the 4th of July; Kurt and Nathan came back to our house on the night of the 4th.  Ashley and I stayed until Friday - with the extreme heat last week, it was nice to be in a home with central air.  On Thursday, Kurt got a call from a nurse at my oncologist's office asking how I have been feeling.  They said that my MRI showed some brain swelling and they wanted to make sure I wasn't having headaches.  They also mentioned that I had persistent lesions but would not explain that any further than to say that my oncologist would discuss with me at my appointment on Monday.  So, while this information was on our minds and a little stressful to think about, we tried not to think/stress about it to much.  As I said to Kurt, they didn't have me come into the office until my scheduled appointment so I took that as "okay" news.

Today we met with the oncologist and she indicated that my MRI showed some brain swelling.  I need to continue to stay on the steroid medication (I've been asking to get off because of weight gain, my continually growing beard :), my facial puffiness, etc).  If I have any new symptoms such as headaches, etc., I need to let them know.  My MRI also showed that one of my brain tumors - I'm thinking it is one that was there before but not positive - is small but has doubled in size from the last MRI.  The other two appear to be stable.  Because of the increase in size of the tumor, I have appointments next week to see both the neurosurgeon as well as the radiation oncologist.  My guess is that they will do stereotactic radiation to that one brain tumor ... but we will find that out next week for sure.

My PET scan showed something in the liver but the oncologist wanted to discuss this further with the radiologist who read my last MRI and PET scan as two different radiologists can look at things a bit different.  In any case, it is very small if there is something there and there is no new tumors.  As far as my hip tumor, we cannot get a clear picture on that due to just having the surgery.

I am "on hold" as far as chemo goes.  I will see the oncologist in 3 weeks after I am done with my treatment from the neurosurgeon/radiation oncologist.  It didn't sound like I would be going back on the current chemo drug I have been taking since the brain tumor did grow - but I am not yet sure what my oncologist is thinking.

I AM OFFICIALLY CRUTCHLESS!  Last night I took my first steps down our front stairs at our house.  Each day is getting better and better as far as my healing from the femur surgery.  I have been "sore" but not in pain and I feel like I am starting to walk better every day.  (Oh, and for those not on facebook, I put status updates that Kurt took out my stitches - he did a great job - and Ashley has given me the shots in my stomach for blood clotting; nice to have two "nurses" to take care of me!)

On a personal (and non-medical) note, we've had lots going on - Kurt has been busy with our house remodel/construction, etc.  We are adding a mud room and covered deck to the back of our house, putting in new windows/sliding door and putting up new siding.  Our house looks like a mess right now but it will be an awesome addition and the new windows and siding will be great as well!  (Since I haven't been able to help, Kurt told me I am a good supervisor!)

I will update my blog again after we meet with the doctors next week and have a better idea of what the next "bump in the road" is.  Thanks for the thoughts!  I continue to believe!

Relay for Life 2012 / Update on Surgery - 6/16-6/17/2012

Kurt, Nathan, Ashley and I spent this past Saturday and Sunday at Al Quaal in Ishpeming for the American Cancer Society's Marquette County Relay for Life.  I've went several years to sign up as a cancer survivor and walk for the survivor lap but we have never formed a team.  This year Kurt formed the team "Jodi's Team Believe".  While we did not raise a lot of money due to ALOT going on, it felt good to have a team.  We also were supported by several people on our team as well as the team that staff at MARESA formed.  While alot of the teams had things for sale or things to do to raise funds for the relay, we now have a better idea of what to expect and can start planning something to do to raise more funds for next year! 

I'd personally like to thank Lori Waara (and her friend, Kim) for not only donating and coming out to walk, but THANK YOU so much Lori for the beautiful scrapbooked picture frame with pictures of me, my kids and Kurt and a post Kurt put to me about being a family as well as lyrics from "I'm Gonna Love You Through This" - WE LOVE IT!!!  I will take a picture of it sometime soon and put it on here - I decided to do it now instead :)!  (And, I was correct when I said my Auntie Kris would see it and start to tear up :)  But I want her to know that it's okay to cry, Auntie!)

Thank you SO much, Lori Waara, for the beautiful scrapbooked picture frame!  WE LOVE IT!!!!

I'd also like to thank all of the people that stopped by to see us!  (I'd put everyone down but I am afraid I would forget someone and feel really bad...)  It was great to see everyone and it made the day go by SUPER fast ... I was REALLY tired by the end of the night. 

I don't know how to explain the way that the Relay makes me feel... mostly that I am joined by other people with cancer and that I am not standing out because of it.  It is an emotional day - lots of different emotions ... happiness to spend time with people I love, hope to see how many people have survived cancer, saddness to see all the luminaries for people who have passed away, etc.  I listened to Cathy O'Donnell (not the Kathy O'Donnell that I work with at MARESA) who was the speaker for the survivor lap and I related to her cancer experience as she had young children when she was diagnosed.  She spoke about how her children would go to school, she would sleep during the day and try to have as normal of a life when they got home.  I cried!

I also wanted to write about some of the newest "family members" that I have acquired during this past year.  I don't know how each of the staff members from the Hematology/Oncology and Radiation Oncology offices do their jobs each day but I am grateful for each and every one of them!  They were there to raise money and support the many people they see in their offices.  I've always said that each one of them has treated me like I am their sister, relative or part of their family and I am FOREVER grateful for them and their wonderful compassion towards their patients and families!!!  They make it a lot easier for me to keep believing!

I will keep everyone updated as we start planning for the Relay for Life 2013.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On another note, I just wanted to send out an update that while I was at the Relay, I physically just was not able to walk due to my recent leg/hip surgery to insert the rod in my femur.  Poor Kurt had the fun of pushing me most everywhere in a wheelchair.  Each day seems to be getting better and better with my healing.  Today I decided I would try to "walk" without crutches ... I took several steps but definitely know that I need some assistance.  It's been 12 days since my surgery and I realize it is going to take some time for walking normal but it felt good to not walk "with" crutches.

Relaxing, Healing & Hoping to Be Back to "Normal" Soon - 6/15/2012

Well, it's been 9 days since I had the surgery at Mayo.  I was discharged on Friday, we stayed until Saturday.  We left Rochester expecting to stay 1/2 way somewhere but as we got closer and closer to home, there was less and less places to stay.  By this point, I just wanted to come home.  We did get out a couple of times to walk around.

Every day seems like my leg movement is alittle better although I am still using crutches so pretty much not being able to do much of anything.  I am able to be full weightbearing but I'm not actually really sure how long I should be using the crutches for.  My leg is alittle sore - it's really bruised up!  Apparently blood loss is not uncommon with this type of surgery so my hemoglobin was a bit low at my oncology appointment this past Monday.  We are holding off with chemo pills for a couple of weeks.  I will have my stitches out in @2 weeks.

Kurt and Ashley have been extremely helpful with everything.  It stinks to not be able to much of anything for yourself - I am ready to be mobile again!  But, I thank them for their continued help with everything!

My family and I planned to take part in the Relay for Life this weekend at Al Quaal in Ishpeming on Saturday-Sunday.  We will be there, although I will not be able to walk.  If you are there, please stop and see us!  (I will try to take some pictures...)

I continue to believe...

Decisions/Decisions and FINALLY Some Answers - 6/5/2012

I've been wanting to blog today but either there was someone on the computers or I was at appointments.  I'm finally getting to it and hope that my tiredness does not make it sound silly.

I'd mentioned the following in my previous blog and thought I would just copy/paste it again:

I also mentioned to my oncologist that I am having some spurratic problems with
hip pain when I get up from sitting on hard surfaces, such as a wooden chair,
etc.  It feels like my hip is out of joint.  She sent me for an x-ray and to see
an orthopedic doctor (whom I'd already seen a couple of years ago for hip
pain).  I saw the orthopedic doctor on Tuesday and from my x-ray, he indicated
that there is something "wrong" with my lesser trochanter.  When I was
originally diagnosed last year, they told me that I had a stress fracture on
that hip; then my PET scan came back and I was sent for an MRI which confirmed
cancer in that area.  I've had radiation and further PET scans show that the
area is healing.  This new finding and because of my history (and the local
orthopedic doctor), I am going to be sent to see an orthopedic oncologist who
specializes in this area.  Of course, there is not anyone locally that can do
this so we are trying to get word from the orthopedic doctor and my oncologist
on who they'd suggest I see - it looks like we will make another trip to either
Detroit or Mayo Clinic.  (Still working on details of all of this....more will
be posted once I know what is going on.  If anyone knows of a really
good orthopedic oncologist in either of these areas, please let us know!)

I received a call at @ 2:30 p.m. on Friday last week that the doctor here at Mayo would like to see me and could we come for appointments on this Monday and Tuesday.  It was such a quick decision to have to make.  We are very fortunate to have such great family support that it worked out to come since the kids have three days of school left to finish out the 2011-12 school year. 

Kurt and I left on Sunday for our trip - missing our niece, Alyssa's 8th birthday.  She was having a joint birthday party with our other niece, Alivia's, to celebrate her 3rd birthday party alittle early!

On Monday, I had bloodwork and an x-ray.  They had called to tell me that we could come early for these tests and they got us in RIGHT away.  We then went shopping a little bit waiting to get a call from the nurse that the doctor was out of surgery and we could come meet with him.  We met with both the nurse and the orthopedic oncologist in the afternoon on Monday.  He reviewed the x-ray images with us.  He asked me questions on my pain level, if I could walk, etc.  He told us that he was shocked that I wasn't using crutches or a wheelchair based on what my x-rays showed.  Basically, the cancer tumor has damaged the lesser trochanter which is part of the femur (your long leg bone that goes from your hip to your knee).  (The tumor itself is decreased in size as well.)  He said that because of my lack of pain, I had a couple of different options but had I been in the pain that he had expected to see, I would have been told I was having surgery this Wednesday to put a rod down my femur bone.  So, the options were:

1 - Have surgery; Surgery could be as soon as this Wednesday (6/6/12).
      PROS:  That it would be done
      CONS:  That I would have to have surgery and there is always risks

2 - Wait It Out
      PROS:  Give us time to think about it and get things in order
     CONS:  Worried that I would do something that would break my hip and then that would mean a total hip replacement and much more extensive surgery/recovery time.  This would also mean that if I had ANY pain in my hip area, I would have to call to get in ASAP.  And, if I broke my hip, a 7+ hour drive/ambulance ride/flight with a broken hip to have surgery.

3 - Think About It  - Basically we have the option to go home and think about it and schedule surgery for a time that works best in our schedule


We did leave without knowing if I was going to have surgery on Wednesday.  After discussing with each other and our parents, I decided it was probably just best to get it over with.  Since I just went back to work not too long ago, I also wanted to discuss all of this with my boss.  And, I did also text message my oncologist to make sure she was okay with me having it and also if I would have a delay in the chemo drug as I am supposed to start that again next week.  My oncologist texted me back to get the surgery done and worry about the chemo drugs later.

So, I called the doctor's office this morning to let them know that I would like to have the surgery.  We then went to their clinic to meet with him and his team, have pre-op work (more blood work, meet with anesthesia, sign paperwork, etc).  We will find out shortly what time I will go in - the nurse thought @ 5:30 a.m. but we've got to confirm this. 

The surgery itself will consist of putting a rod from my hip to knee down my right leg.  There will be screws placed by my hip as well as my knee.  The doctor said the average hospital stay is usually about 3 1/2 days, he'd like me to go to the hotel for one day after discharge and then we can drive 1/2 way home the following day with the other 1/2 day the following day.  So, if all goes as he hopes, we will be leaving on Sunday and home Monday.  They figure it will take 1-2 months of healing to be feeling back to where I am now.  (I did have a witty little thing I said to Kurt this morning about the rod and screws but I think I will leave that up to the imagination - I don't want to offend!)

I am glad that we found out what has been going on and that I didn't ever break my hip!  I'm also very thankful for the recommendation of the doctor that was given to me by a relative's brother who works at Mayo.  I feel VERY comfortable with this doctor and his colleagues!  As I heard from so many people about Mayo, everyone has been wonderful to us - it's a busy place but they definitely know what they are doing and how not to stress you out! 

Thank you to Ray and Kay for keeping the kids and taking care of the animals (Zoey, the dog, and Speedy, the turtle) this week; my mom and dad for watching them as well.  And, to my grandma, aunt, my neighbors and everyone else who called and offered to help!  (As that saying goes, "It takes a village...")  As of right now, the plan is that my parents and the kids will leave on Thursday morning to come and see us for a few days.  They were excited for their last day of school (Wednesday) and it doesn't seem necessary for them to come to wait out a surgery and a day of healing.  We will keep them updated on what is happening ... It doesn't make it easy though!

I will be sure to have Kurt update the blog and facebook...  Thank you for your thoughts, prayers, etc.  We believe!

Hopefully I will feel up to blogging in the next few days but I will be sure to have Kurt update the blog and my facebook page! 

A Year In Review... MANY Lessons Learned - 5/17/2012

I thought I would try to blog tonight as I haven't blogged in awhile again ... but this time, I must say there is a lot going on (most of which doesn't have to do with cancer)!

First, part of the reason for my lack of blogging is that I went back to work and I just don't feel like I have enough time when I get home and I am a little tired by then anyway.  I went back to work full-time; I started with a trip to Detroit (Kurt joined me) the week of April 30th.  I had two classes to finish my human resource specialist certification through Michigan School Business Officials so I went to Detroit to take those classes and got my certification!  Considering all that has happened in this past year, I was very excited to finish the certification process up and know that I did it!  There was a few trips last year that I went on where I wasn't feeling well (probably know the reasons now) and then there was the fact that I didn't know if I would be here to finish up.  I'm grateful my employer allowed me to finish!  I've been back in the office the last two weeks (well, almost two weeks now) and it is so nice to be back, getting reacquainted with  my job again, feeling some bit of normal and enjoying being around my amazingly awesome co-workers!  This week was a true "test" for me as it is a chemo week...  while I am tired, I think it has gone relatively well. 

As I said, I have lots of little things to talk about too:

• Kurt and I were able to enjoy some Tiger games while we were in Detroit for my classes.  One rain out, one win and one loss!  So, we have some tickets to a game in September since it was rained out!
• On May 10th, it was one year to the date that I was diagnosed with my brain tumors; the next few days were full of tests, tests and more tests.  (Oh, and for those who came to visit in the hospital, of course, talking about my stinky pit.) 
• On May 12th, my family, my mom, my nieces and nephew, my Auntie Kris, Kurt's (and mine too) Auntie Lois and cousin Shanon walked in the Hope Starts Here Brain Tumor Challenge at the Lower Harbor.  As we were walking, I realized that one year earlier to the date, I was having my first craniotomy.  Now this challenge is put on in part by the neurosurgeon who did my craniotomies.  Because of his expertise and precision during my craniotomies, I am able to function, speak, etc.  I am very lucky - and it is in large  part due to him!
• Having to wear scarves as I am back to work is one of my least favorite things lately; I've been wearing my hats once and awhile too!
• My next PET scan will take place in June; my next MRI will take place in July!

This past week I met with my oncologist for a check up.  All my blood work came back fine.  I was able to start my next round of chemo meds on Monday night.  She said I am definitely retaining water ( Kurt just said to me, "I am not fat; I am just swollen!").  I feel like I gain 2# each day which is not fun; but, I will take it over the effects I might get by getting off the medication that is causing this.  She put me on a water pill (it reminds me of my Grandma as she's been on one for years).  I will start them once I am done with my chemo pills and hopefully will lose alittle of this puffiness.

I also mentioned to my oncologist that I am having some spurratic problems with hip pain when I get up from sitting on hard surfaces, such as a wooden chair, etc.  It feels like my hip is out of joint.  She sent me for an x-ray and to see an orthopedic doctor (whom I'd already seen a couple of years ago for hip pain).  I saw the orthopedic doctor on Tuesday and from my x-ray, he indicated that there is something "wrong" with my lesser trochanter.  When I was originally diagnosed last year, they told me that I had a stress fracture on that hip; then my PET scan came back and I was sent for an MRI which confirmed cancer in that area.  I've had radiation and further PET scans show that the area is healing.  This new finding and because of my history (and the local orthopedic doctor), I am going to be sent to see an orthopedic oncologist who specializes in this area.  Of course, there is not anyone locally that can do this so we are trying to get word from the orthopedic doctor and my oncologist on who they'd suggest I see - it looks like we will make another trip to either Detroit or Mayo Clinic.  (Still working on details of all of this....more will be posted once I know what is going on.  If anyone knows of a really good orthopedic oncologist in either of these areas, please let us know!)

It's hard to believe that a year has gone by, yet I feel like we have been through hell and back in many ways!  My family has had a tremendous amount of stressors during this last year (my brother getting divorced and my being diagnosed with cancer to name just a few).  I can honestly say that I have learned MANY lessons about life... try not to stress about the small stuff (because that is just what it is), be thankful for the blessings in your life (family, friends, love, faith, believing) and don't take things for granted because in a moment, things can change!

I'm VERY greatful for all of the wonderful people in my life!  I've had so many people thinking and praying for not only me but my husband, kids, parents, inlaws, etc.  I'm greatful that I have gotten to make wonderful memories with my children - such as our trip to Florida, etc.  I've gotten to spend alot of time with my husband while we were home together and the kids were in school.  I've been able to spend more time with my brother and his kids - it's wonderful to have a close relationship again with my brother and to be a bigger part of my nieces and nephew's lives!  Of course, it goes without saying - I am most GREATFUL for my wonderful family and friends!  I know I can't always be the easiest person to be around but I am forever thankful for you sticking by me and keeping my spirits up.  Without you, I don't know how I would have made it through this past year!  Most importantly - I continue to believe!

(And Kurt :), while I know that it isn't always easy, thank you for being a wonderful nurse/caregiver, channel-changer, chaffeur, constant worrier, head rubbing/kisser, protector and most of all... the love of my life!)

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!