Radiation Graduate (AGAIN) - 12/30/2011

I thought I would blog quickly about being done with full brain radiation.  I sometimes forget that I post stuff on facebook but not everyone is on facebook.  I had my 10th (and final) radiation treatment yesterday afternoon and then Kurt and I went out to the Portside for a celebratory lunch.  I was given my mask to take home (pictures below) and had a great suggestion from a friend whose mother went through radiation treatments - have a MASK BURNING CEREMONY!  I will plan to do that at some point - not sure when yet but definitely will need to do it.  I'm not exactly sure why I'd want to keep it anyway.  As I've said about most of my radiation treatments (halo and mask), it reminds me more of the SAW movies than anything! 

I do want to say thank you to the wonderful workers in the radiation department at MGH!  They were very patient with me when I was EXTREMELY nervous about being under the mask and they answered all of my MANY questions.  My dad had me laughing because when I go in, they always say, "Jodi, please tell us your name and date of birth."  He suggested that I ask what they would do if I gave them the wrong name and date of birth ... so yesterday I asked them (AFTER I told them my name and date of birth of course).  They said that I'd be surprised to know that both Barrack Obama and Marilyn Monroe have been there for radiation.  (So, apparently there are either people who truly don't know who they are or are goofing around with them.)  Again, thank you to all of the wonderful people who take care of me when I have appointments!

The actual radiation treatment lasted @ 20 seconds on each side of my head.  Every day I would say a prayer when the treatments were going - I can only hope that those prayers produce the miracle that I was praying for!

Here are a couple of pictures of the mask that I had to wear for radiation:

This is my mask sitting on my kitchen table!

This is a picture of what radiation and the mask looks like on a flyer they gave me ...
much better than the picture that I took with it on to show my family (a picture I will not share)!

I'm looking forward to 2012 and hoping that it is a much healthier year!  I meet with my oncologist next week and will hopefully have a better idea of what treatment I will be taking part in.  I know it might not be easy as most chemo patients do get sick, lose their hair, etc.  I just hope that whatever I have to go through, I am able to have some relief from brain tumors and be here for a LONG time! 

I believe!

Two Steps Back, One Step Forward? - 12/19/2011

I know the saying is "One step forward, two steps back" but I am wondering if because I had a few steps back with my last MRI that there is the possibility of the news from the oncologist today being a step forward.  I also contemplated calling this one "The Most UN-Amazing Brain" ... you'll see why after the rest of my blog...

Today Kurt and I met with the oncologist in the morning.  She indicated that my PET scan again showed improvement in both my liver and hip tumors which means that the Ipilimumbab is still working on those areas.  There was also no signs of new tumors!  Good news in my eyes (one step forward).  :)

Of course, we discussed my previous MRI in more detail.  She indicates that the majority of tumors that were radiated in Detroit were still there and the same size although a few have grown a bit.  There is also new tumor growth.  I asked more questions about all of the brain tumors and learned that as long as the tumor(s) remain the same size (or smaller) and no new tumors, they are considered okay.  With the recent MRI showing that I am still producing new tumors (hence "The Most UN-Amazing Brain"), I started the full brain radiation last week.  Because it wasn't clear to any of us, I asked her if the radiation just did not work down in Detroit since I had new tumor growth.  She explained radiation in this way:  stereotactic or gamma knife radiation (direct radiation to the tumor(s) sites - which is what I have had previously) is best described as "weeding" your grass.  You put weed killer on the weed(s) but even if it kills the weeds, there may still be seedlings that could develop into more weeds.  Full brain radiation (radiation to your whole brain) puts a weed killer on your whole brain and hopes to destroy both the weeds and the seedlings.  More on radiation in a few...

So, because the Ipi continues to work on the two tumors, she is hesitant on starting me on the BRAF chemo drug.  She said she'd like to save that option in case those tumors start growing or  I have new tumor growth.  All of the following are options after I am done with radiation:

- Wait it out for 4-6 weeks with no medications; have a repeat MRI (and PET scan????) to see if the radiation alone has helped.
- Ipi treatments again ... although they appear to not be working on my brain so this is probably the option we are least considering right now?!?!
- The original option of the Temador chemo drug (this is the first drug she was thinking of giving me before Ipi became FDA approved).  This drug is used for patients' with brain tumors and tumors usually react to it.  It's a pill each day for 5 days and then you go a month without medication.  In some people there are side effects such as hair loss, nauseau, etc.
- BRAF chemo drug (zelboraf) - two pills, twice a day; newly FDA approved and considered to be working well on melanoma patients with brain tumors.

I did ask if we could take one of the chemo drugs along with Ipi since the Ipi is working on the liver/hip tumors.  She said that there currently is a clinical trial on that so it is not an option yet but that there is an IV drug like temador which could be used with Ipi (which, I am guessing, is another route or option for me as well). 

The oncologist said that if she were to ask 10 oncologists that have worked with melanoma patients what they would suggest, she would get 10 different answers.  So for now I will continue my radiation treatments and we will meet with her after the new year to decide what option we (her, Kurt and myself) think I should take part in. 

This afternoon I had radiation #3 of 10.  It was VERY quick today!  For someone who is very claustrophobic, this radiation has made me a little nervous.  They mold a see-through white form over your head which attaches to the radiation table so you cannot move your head at all.  The first two days my face must have been more swollen because I had the boxes (or "waffles") on my face when I came out - shows how tight it is.  Today I could move my lips a little bit and the radiation was a matter of minutes from start to finish so I was okay!  Only 7 more to go ... I can do it!!!

As for what happens next, I will post as soon as I know more!  :)

Finally, I hope that people know that I blog mostly to get everything that is happening off my chest as it is therapeutic to me; second, so that my family/friends/etc can hear it first hand from me and they are getting the most accurate information; third, if any bit of this information can ever save someone I know from going through this same situation; and, lastly, as with any person who is going through some medical trauma, I am looking for nothing more than support!

Medical Update (and Florida/Disney Magic Hopefully Coming Soon...) - 12/13/2011

I've been wanting to blog since we have been on our vacation or home but there has been a lot of things that either need to get done or are priorities at this time.  I thought I would blog tonight about some things that are going on and then in a near-future blog, will update on our wonderfully magical trip to Florida!

As stated in the blog previous to us leaving for Florida, I was having some issues and went in for an MRI on Wednesday before Thanksgiving.  We then met with the neurosurgeon's PA that day and learned that my six tumors were still there and enlarged and were slightly swollen.  They also thought that I was having some seizure activity and put me back on the anti-seizure medication, Keppra.  They did give us the okay to go on our trip and so we (Kurt and I) decided that we were going to keep this information to ourselves until our return.  We felt that we didn't learn a whole lot of new information and also weren't sure exactly what was going on - plus, we wanted to give the 'worrying' as much of a rest during this vacation and knew that if our families were aware of these issues, they would be calling/worrying more possibly.

When we returned from vacation, there was a voicemail message from my oncologist from the Monday prior so yesterday I called her.  She was not in the office the day that I had my MRI so she wanted an update on what happened.  She knew that we knew of six brain tumors still and said that she would contact the radiation oncologist and see what his suggestions/thoughts were; she also said I would see her next Monday (12/19) and would most likely start the BRAF Inhibitor chemo drug.  The radiation oncologists' office called yesterday and set up an appointment on Wednesday.  Both of the kids have Christmas' programs that day so they rescheduled my appointment to today.  So, today I had my PET scan and then met with the radiation oncologist.

I will not know anything about my PET scan until I meet with my oncologist on Monday, December 19. 

During my appointment with the radiation oncologist this afternoon, we found out that my most recent  MRI (done @ 2 1/2 weeks ago now) showed 8 brain tumors.  When I went to Detroit at the end of October/beginning of November, there was 6.  I'm still a bit confused on which are new, which are old ones that have grown, etc.  There are a couple of new ones that are fairly recent growths - one of which is in the pituatary area of your brain and the radiation oncologist indicates that this is fairly uncommon to have one grow there.  There also appears to be a new growth on the right part of my brain that had surgery performed.  He suggested that I decide whether I am willing to go through full brain radiation or whether I would like to go back through stereotactic radiation - stating the pros and cons of both.  My oncologist is also suggesting that I start that BRAF inhibitor so I believe I will be starting that after seeing her on Monday. 

I decided not to wait any longer.  It appears the stereotactic method of radiation is not working overall as I continue to have more and more tumors each time I have a MRI.  I think it is time to start full brain radiation and hope that full brain along with the BRAF chemo drug will work together to zap these and any new tumors!

They mapped out my radiation this afternoon and I will begin treatment on Thursday.  Radiation generally only takes 15 minutes each day and they usually only do 10 sessions.  I will see my oncologist on Monday and will update any new information after that appointment!

As hard as it gets, I still continue to believe!!!!

Thank you for your thoughts, prayers and concerns!

Love, Jodi

Happy Thanksgiving, Giving Thanks - 11/25/2011

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

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

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

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

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

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

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

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

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

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

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

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

We believe....

6 Months Since Diagnosis - 11/10/2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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