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

Back to Detroit - Rock City - 10/26/11

Well, more information now....

My oncologist called me this morning and let me know that Karmanos will do the stereotactic radiation on my brain tumors (or as they call them lesions).  We will be going down on Sunday, meet with the doctors in the afternoon on Monday, hang around Detroit that evening and then Tuesday I will have the radiation.  Again, I will go there, they will put the halo on and start the process of mapping the radiation sites.  It is possible that they might not be able to do it all in one day; if that is the case, I may stay in the hospital with the halo on or they may take it off and then do the second round of radiation on Wednesday.  We won't know this until we meet with them on Monday (or possibly not even until Tuesday).  The poor woman who called me to discuss this had MANY questions.  She was very kind about answering all of them.  One of my questions is that I had stereotactic here in Marquette and my biggest fear of having it again is getting the halo off without sedation.  I would definitely do it again - the pain was horrible but I will take that pain for that short amount of time.  She said we would discuss that further at the Monday appointment.

After the radiation, I will start zelboraf (vemurafenib) - the twice a day chemo pill specific to melanoma patients with the specific BRAF mutation which was recently FDA approved.

While I definitely cried (didn't look to good going back into my workshop after those few calls with tears and puffy eyes but oh well), this information has definitely lifted my spirits again. 

Thank you to everyone for all of the thoughts, prayers and love!

I believe!
Jodi

Needing LOTS of Prayers and a Little Humor Right Now - 10/25/11

Today I went for visit with my oncologist for the follow up on my PET scan as well as the results of what the tumor board (which included my oncologist, my neurosurgeon and my radiology oncologist) thought would be best.  Of course, as in one of my past blogs, you take the good and you take the bad - after all, it is the Facts of Life.

So, since I am trying to continue my optimism (ha ha), I will start with the good.  My PET scan showed that both the tumor in my liver and hip had gotten smaller - there are still tumors there but they are smaller.  I believe that this meant that the Ipi has worked on both areas.  I also had radiation therapy on my hip so that probably helped some with that area. 

Okay, so on with the not as good news.... my last blog talked that my brain MRI showed 4 tumors.  I actually have 6 tumors on my brain.  My oncologist has started me back on the swelling medication because the tumors show some swelling.  She also was in contact this morning with the doctor that I saw at Karmanos in Detroit as well as doctor at U of M.  She would like to see if they would be able to do stereotactic (targeted to the specific tumor sites) brain radiation on me.  Usually their criteria is three tumors or less but she is hoping that because of my age, they will accept me for this procedure.  The other issue is whether they could do it soon.  If this is an option, they will send me for radiation and then start me on that medication for BRAF (I will post the name again on my next blog).  If they do not accept me and are not able to do it soon, I will have full brain radiation at Marquette and will start on a different medication for this time.  (This type of stereotactic is not an option in Marquette.)  After it is done, I will be started on the BRAF.  She also made sure to tell us that some times the Ipi will show that tumors are worse or the same and then a couple of months later, it could show significant improvement.  She said this still could happen. 

I was scheduled to leave for Lansing today for work with my mom and aunt.  My oncologist was okay with it as long as I started on the swelling medication.  She said that if either of the doctors called with more information, she would be in touch with me by cell.  I haven't heard from her yet but will update my blog once I know what my next procedures will be.

Today was a difficult day.  We had a lot of information to digest (of course, we are always hoping for some good news).  She also said that we haven't really talked about this and with us having small kids, she would suggests that I get my affairs in order.  As we've all known, this is something that needs to be done.  Kurt and I have talked a bit but need to have much deeper discussions.  This was probably the hardest of things for us to think about during that visit.  I think had we heard it a different day, it might have been accepted a little easier.  (Too much negative information in one visit.)

We have been planning to take our kids to Disney for years and decided earlier this year that we would try to take them in March.  Because of everything that has happened, we decided it is probably best to move this trip up to as soon as we can.  My oncologist suggested going after radiation. 

Today was a very emotional day for us.  I've shed MANY tears today!  That, however, does not mean that I am giving up... I still believe!

I will update my blog as soon as we know the next steps.  Thank you all for your thoughts and prayers!

Darn Tumors - 10/10/2011

Today I had my follow up MRI regarding the tumors in my brain.  The last MRI was approximately 8 weeks ago.  After the MRI, we met with the neurosurgeon to discuss these results.  The two tumors that were there in August were still there and bigger; there are now two more new tumors.  The neurosurgeon will set up a time for him, my radiation oncologist and my oncologist to discuss my results during the tumor board in a few weeks.  It sounds like the neurosurgeon would think it best for me to go through full brain radiation as well as get on the new chemotherapy drug.

My PET scan is next week and I have an appointment to see my oncologist  the same day that the tumor board meetings the following week.  I should know exactly then what they have decided as well as what my PET scans showed with the tumors of the liver and hip as well as if there are any (hopefully not) new ones.

I thank everyone for the prayers and thoughts!  I still believe!

The End of One Journey - 09/27/2011

Today I had my 4th treatment of Ipi (Yervoy). I was surprised that after the fourth treatment, I am done.

I will have an MRI on my brain in 2 weeks (this will tell us how the 2-3 tumors are and if they reacted in any way to the treatment; of course, it will also tell us if there are any new tumors).

In 3-4 weeks, I will have another PET scan. This will show if the tumors in my hip and liver (as well as brain) have gotten smaller, bigger or the same size. It will also tell if there are other areas with new tumors. If the tumors are the same size or smaller, I will not have treatment; if they are bigger or there are new ones, I will start a different drug for treatment. The thing about Ipi is that even if you have a slight increase in tumor growth after the fourth treatment, 30-40% of people will have a decrease in tumor size a while after the fourth treatment is done. If I do not have treatment, I will have PET scans every 8 weeks for follow up.

I will meet with my oncologist again in 4 weeks.

I had received holy water from a retired teacher and friend who worked with my mom. It just happens that she got it from one of the nurses at the oncologist office who had cancer and is now in remission. This morning I used part of it. I will keep some more for my next few appointments.

Thank you to everyone for your thoughts and prayers. Please keep them coming :)

Fun Weekend & Back to A Somewhat "Normal" Routine (At Least for a Week) - 09/18/2011

On Friday, Kurt and I went for my 10 day checkup after having my 3rd treatment.  My blood work came back really good - my hemoglobin is still a bit low but did increase since the last blood work on treatment day; plus it is not extremely low so it shouldn't be a problem.  I will go back on Tuesday, September 27th and hopefully will have the 4th treatment.  I will find out more on what will follow - my guess right now is that I will have both a PET scan and an MRI to see how the cancer has reacted to the treatments.  From there, I am not sure where they will go.  I could still continue on the Ipi (Yervoy) or they could try me on something else - possibly the newly FDA approved drug.  We'll wait to see what my oncologist says on the 27th. 

This weekend our family went camping at Van Riper for Harvest Fest (campsites are decorated for Halloween and the kids dress up to go trick or treating).  It was a great weekend spent with my mom and dad, my brother and his three kids, other family and friends!

The Ball Family @ Van Riper for Harvest Fest - 09/17/2011
(This picture also shows that my hair is growing relatively quickly)
**Nicest picture we took - not to keen on the fake gun Nathan is pointing at Ashley though!**

Tomorrow I will be returning to work since May 9th!  I was given the okay by my oncologist and neurosurgeon to go back but my oncologist would like me to do a week at a time and take it slow.  Since I am still in treatment, I will be off for those weeks.  We will see how this next week goes and go from there.  I'm anxious to get back to 'normal' life and to see my co-workers!  My top priority though is to keep myself healthy and if it gets to be too much, I will have to slow back down. 

Finally, today is my Grandma Porter's 84th birthday - HAPPY BIRTHDAY 'COOKIE GRANDMA'!

Emotional Moments Being a Mom Battling Cancer - 09/10/2011

This day started out fairly normal with Kurt working (scheduled on a Saturday), Nathan signing up for flag football for 3rd, 4th, 5th and 6th graders, etc.  My mother-in-law, Kay, drove us to Negaunee for flag football and then Ashley and I spent two hours hanging out with grandma! 

We came home and were relaxing, watching t.v. and waiting for Kurt to get home from work.  Not sure how the discussion began but Ashley started telling me how she talked to a couple of her classmates about me and they asked if I was going to die.  I asked her how she answered and she said, "No!"  I gave it some thought before I proceeded ... Do I want to give her false hope that I will not die?  Does she know that there is a possibility that I could?  Both Kurt and I have been pretty open with the kids since the beginning and want them to know what is going on without trying to have them stress or worry about it.  I decided to ask her if she knew that it was a possibility?  She told me she did and when I asked her if she thought like I did and that I am going to fight it, she said yes.  Of course, I shed many tears during our talk (and many more since)!

I got a phone call which broke up our discussion for a moment.  When I returned into the living room, Ashley just kept looking at me.  Of course, that made me cry more!  I told her that I plan to fight cancer and hope to be around for a LONG, LONG time.  Ashley told me that one of her classmates was really worried about me and I asked if Ashley was also.  She told me she was (even though I already knew the answer)!  I told her that there should not be any child (especially an 8-year-old) who has to worry about their mom!!!  Ashley and I both began crying.  Nathan walked into the room and joined in the conversation.  He is usually more silent about things but mentioned he talked with a friend who asked if I survived.  Nate told him that I did but that I still have cancer.  Again, I told him that I plan to be around a long time and hope that I can be here to see them graduate, have babies, etc.  We all sat together and cried!

The reason I tell this story is not because I want our emotional family moments to be out there but because I don't think alot of people (including myself) realize how much children are affected by a parent or loved one with cancer.  I know my kids think about it but I guess I didn't realize how much they talk to their friends about it.  As Oprah would say, it gave me an "Ah-ha" moment - how much I LOVE my children and how if something should happen to me, how much I want them to know what they mean to me!  I know they showed me today how much I mean to them!

An Amazing Weekend, 1st Day of School for the Kids and 3rd Treatment - 09/06/2011

I must start by writing a bit about this past Saturday, September 3rd, and the benefit that Negaunee Township Fire Department and many other helpers, people who donated, etc. provided for my family and I.  (It also happened to be my mom's birthday!)  One day soon I will write more about it in detail but I didn't want to forget to mention it right now!  It was very overwhelming (yes, my word - I should look up another word in the thesaurus)!!!  There was such amazing support with people who attended, gave donations, organized and helped with the benefit.  We are very grateful for the support!  It was a long day but I made it until the end with only a few breaks.

Today was the start of school for the kids.  Nathan is now in 6th grade and starting his middle school career.  Ashley is in 3rd grade and will now be on her own until she is a freshman and Nathan is a senior.  They both had an excellent day and are VERY tired out!

After dropping both kids off to school, Kurt and I headed to Marquette for my blood work and visit with the PA.  My blood work came back good again but he was wondering why my hemoglobin was slightly low so before I could do my treatment, he wanted to have another blood test done in the lab to make sure my body wasn't fighting my hemoglobin.  It ended up that I got my 3rd treatment in the end after some waiting for the lab.  I came home and took a 2 hour nap but I feel pretty good.  It's been a few very long and emotional days; I plan to take it easy for a few days and rest when needed!

As of right now, I am scheduled to have my 4th treatment on September 27th.  I will have to wait three weeks after that appointment to go through another PET scan to see how the spots of cancer have reacted to the Ipi!

Thank you again to EVERYONE for your support!

News On EEG, Driving, Etc! - 09/01/2011

I contacted the nurse at my neurosurgeon's office again this morning since we've been waiting almost two weeks for results of the EEG that I had.  This morning the nurse told me that the EEG had not been read yet but he would contact me as soon as he got the results.  I also asked if he could get clearance from the neurosurgeon for me to return to work as my oncologist gave me the 'okay' - I also mentioned that I have already discussed with my boss about going back for a week and then seeing how it goes ... basically going week to week depending on how I am doing.

The nurse returned a call to me this afternoon.  He told me that he had good and bad news.  He said my EEG came back great (no seizure activity), my neurosurgeon gave me the 'okay' to go back to work but the bad news was that they could not okay me to drive as the day I was in the ER, a doctor documented that I was having some seizure activity in my hands.  This means that by law they cannot give me approval to drive until 6 months of being seizure-free.... November 10th!  I could tell he felt bad as he knew how much I wanted to drive.  It is a bummer BUT I would much rather be safe than sorry!  (I think about the many times that I drove before my surgery that I wasn't feeling right and probably shouldn't have.)

I am also able to start weening myself off the anti-seizure medication - it should take about two weeks. 

Good news all in all ... and now I only have 10 weeks (EXACTLY) before I can drive.  (There is a bonus to this... it will give us time to find another vehicle eventually since we sold my Tahoe and I wouldn't have a vehicle to drive anyway!)

Trusting Your Medical Team - 08/29/2011

I haven't blogged in a few days/week as I have been waiting to find out some information from my oncologist before blogging. 

Last week I called my neurosurgeon's office to find out about my EEG results and spoke with his nurse.  They informed me they didn't have the results back yet but would call when they get them - haven't heard anything yet!  (I had an EEG because I keep BUGGING my neurosurgeon about driving again... they need to find out if I have any seizure activity before they will make that decision.)  The nurse also told me that I was discussed at the tumor board meeting that week and that both my neurosurgeon and the radiation oncologist were there and thought it might be better to have me go on the newly FDA approved medication (also the one that I went down to Detroit to get in on the clinical trial).  But, ultimately, it would have to be discussed with my oncologist and she would have to agree to it. 

Today I had an appointment at the oncologist office with the PA.  My oncologist was also there today so Kurt and I first met with the PA regarding my check up (blood work was still VERY good, my potassium was above normal now and everything was good).  I've been feeling very well this entire time since my 2nd treatment - a bit of a rash and my hip can get a bit painful (which has been normal for over a year) but I can handle that versus being sick, etc.  Can't complain!  Anyway, the oncologist came in and we discussed both options.  Since I have only had two treatments of Ipi (and you should have four treatments to see how you react), she would like to keep me on that.  She also said that studies show that people may have tumors grow during the 2nd-3rd treatment of Ipi but that once they are done with all 4 doses (and sometimes even months later), they may see that it works well and shrinks the tumors.  She also said that while the new drug does show that the tumors seem to respond well and shrink fairly quickly, the trials have shown that the tumors can be back within 6-9 months and Ipi has a higher rate of keeping your cancer response for a much longer period of time - sometimes years!

So, the final decision is that since I haven't been overly sick and the Ipi seems to have some good responses in my body (like my hip hurting - as they figure that the Ipi is in the hip and causing some inflammation so that is why it is painful), I will continue my 3rd treatment next Tuesday as long as my blood work comes back good again!  We can ALWAYS go to the other medication but for now, we will continue to finish the 4 treatments of Ipi.

My family and I put a lot of trust into the three wonderful doctors (plus countless other staff) who work together to make decisions that best meet my medical needs at this time!  I know when I see them, they are all thinking that I am only 36 years old with two young children and they want to do what it is my best interest to keep me around for as many years as possible!

Living in A Wonderful Community with Caring People - 8/21/2011

I feel bad that it has taken me a couple of days/weeks to write this blog and get these pictures up... 

I am so lucky to live in a wonderful community - well, actually to have grown up in Gwinn and now live in Negaunee Township.  Both communities (and surrounding areas) have been overwhelmingly generous to our family! 

The first picture that I will post is one of Casey and I.  She is giving me a check for the proceeds of the bracelets that the U.P. P!nk Power purchased and sold (along with so many others).  (Thank you to everyone who sold, purchased, wore, etc. the bracelets - and a special thank you to Casey Arkens!  Love you!)

The second picture is a sign that was put on a hole at the golf course at Red Fox Run for the Cancer Care of Marquette County Golf outing.  The picture is of me and my daughter Ashley along with golf partners (and donors of the hole):  Sally Searle, Peggy Mullen, Pat Makela and Laurie Van Damme (my parents' neighbor).  Casey Arkens also donated but did not golf and was not in the picture!

Thank you to everyone for the love, support and encouragement!  We are forever grateful!!!!

You Take The Good, You Take the Bad (I LOVED that show growing up) - 8/17/2011

Today I went for an MRI of my brain since it's been over three months since my first round of them.  (I was glad to see that my high school classmate was again doing my MRI!)  I was also very lucky that they rescheduled my MRI so that immediately following it, I was scheduled to see my neurosurgeon to get the results.  We found out that the new MRI shows three different small spots of concern to him.  He thinks one COULD be a blood vessel based on where it was but that the other two are spots that they are going to have to watch.  He was going to talk to the radiology oncologist to look at the results and then in 4-6 weeks, I will go back in for an MRI and follow-up appointment with him. 

This, obviously, was not the best news we could hear... in fact, when the doctor walked out of the room, we may have heard an explicit come out of Kurt's mouth!  :)  I asked if they found these spots on the next MRI, what would be the next steps.  He said that they could again do the stereotactic radiation (with the halo and a one day radiation therapy) or they could do a full brain radiation - which scares me a bit also because of some of the capacities you can lose from having full brain radiation too much over a period of time. 

I like to think there is ALWAYS some good in dealing with bad situations or news - I am glad to see that the three spots are all on the right side of my brain.  This means that it should not affect my speech as that is what the left side of the brain is responsible for!

We also heard the good news that the drug that I went down to Detroit to get on a clinical trial for was FDA approved today.  (The drug's name was Vemurafenib which has now changed ... if you are able to view my Facebook page, I have a link to some information for that!)  The thing that the doctor in Detroit said was that neither Yervoy (Ipi) or this drug have been tested or watched to see how they react to someone with metastatic melanoma of the brain (or brain tumors that are melanoma).  He did say that Ipi has a higher molecular "build" so it would take longer to get to the brain to work on those tumors... but did not say that he thought it couldn't get to the brain.  We are hopeful that with further treatments, we might start seeing some results on my brain.

Of course, I am anxious to drive again some day so I asked the question of how long I would need to be on Keppra (which is an anti-seizure medication).  They are sending me for an EEG tomorrow to see if I previously had or currently have had any seizure activity.  He said he would call me within a few days after that test with the results - but didn't really give me any definite ideas on when I would be able to drive!  :)

Next Monday I am scheduled to see my oncologist for a follow up visit after my 2nd treatment.  I will be asking her once again if I could try to go back to work - even if it is only one week on and a few weeks off.  I'd like to get some type of normal back in my life... and with that, I think it would be good for me!

For now, I will be praying that those spots were just "spots" and they will be gone in a month!  Thank you to everyone for your concern/care/prayers/etc.

A New Chapter - 8/14/2011

As I was thinking about it today, I thought about how Kurt will be going back to work tomorrow after being off since May 10th with me and also that Nathan will be going to band class these next two weeks.  And then in only a few short weeks, the kids will be back in school and I will be left at home alone - well, with Zoey the dog!  It's like a new chapter to this adventure is starting...  I am happy (sort of envious actually) for Kurt that he is going back to some 'normal' life but it will be very different because he's responsible for a lot of things around here... like driving, taking me to appointments, etc.  I am lucky to have great parents and inlaws that are definitely stepping up to the tasks that we have to get done!  (I will definitely miss having Kurt at home with us though!)

Of course, this week is full of appointments for me and the kids - doctors/dentists/band class/etc.  I will be going in on Monday morning to see how my blood work I had done today turned out and see if I am able to get my 2nd Ipi treatment.  Since I have been under the weather for a few weeks - and not eating the best - I would not be at all surprised if my levels are low.  But hopefully high enough that I can have a treatment!

I will be going in on Tuesday for an MRI of my head - can you believe it's been three months since my surgeries?  It's time to see how things are and how the radiation therapy went.  A little nervous, anxious, etc. for the results of this.

And, hopefully somewhere in the time that I will have during the day, I will get my 'thank you' cards done to some people who sent us things far too long ago - I am sorry for the delay in getting my thank you's out to you!!!!!

Hoping for luck with my counts tomorrow morning!

Outcome of Detroit Visit on Mon, Aug 8th - 8/9/11

This may be a quick blog that I'll update further later as I am typing it with my iPhone ;)

Yesterday we went to Karmanos Medical Center and met with the doctor that specializes in melanoma. (My oncologist in Marquette worked under him before coming to Marquette!). The whole experience was a bit overwhelming (this is my new word during this whole experience). After discussing my medical history with the doctor, he had me get dressed ... And he went to call my oncologist. He came back in and discussed the clinical trial information with us - basically the drug is awaiting FDA approval anytime between July and October. He said that the drug has good response rates but not everyone responds the same. He felt some of my symptoms from the Ipi (rash, fevers, etc), indicate that the Ipi is working.

All in all, there was some testing on my tumor that needed to be done by some place in California prior to getting in on the trial - this was not done yet. So, based on their conversation, the doctors concluded I should continue on the Ipi treatments and hope this drug will be FDA approved so I could just get it in Marquette if needed. (He also indicated that he would push for me to get on this trial quicker - or drug is FDA approved - if I was sicker... So I guess that is good news!)

So, I will be calling my oncologist to schedule an appointment for my next treatment.

A Lot Going On - 8/1/2011

The last week has been pretty busy, emotional, etc....

Last Wednesday night the kids and I went to my Auntie Kris and Uncle Rich's camp in Gwinn to visit with my Uncle Sonny, Auntie Norma and other family members.  We spent the night in Gwinn at my parents.  (Kurt headed out to Houghton/Calumet with other firefighters to golf and have fun before firemen's tourneys!)  I left Thursday with Michelle Kontio and Lisa Cory to meet our husbands.  We spent the next few days at parades, the firemen races, etc.  It was fun but I was definitely tired when I got home on Friday afternoon/evening.  On Saturday evening, we went to a wedding reception for one of my cousins and I saw a bunch of my relatives who were here visiting!  Sunday I spent the afternoon with my cousin, Laurie.

This past couple of weeks I have talked to a few of those close to me about some of the things going on and also some of my emotions.  I have shed many tears - must be more emotional this week!  When I talk to people throughout this whole process, I've tried to remain more positive about my future... but believe me when I say that I think daily about what my future could hold and how I might not be around for things.  Every event gives me thoughts... Like Nathan's birthday party just a few weeks back when I thought that I might not be here for his 12th birthday..."  As I have said MANY times before, I BELIEVE in miracles and I hope that Monday will be the start of one of these so I can be here for MANY more of my kids events/birthdays/etc.  (See, again I am tearing up...)

Tonight, our family is going to watch Kurt's softball team play.  Kurt has not been able to play this year due to all going on.  And, it seems that every time they have called to tell us where they play and to come watch, I wasn't feeling well or we had other things going on.  Last week we were not able to go and one of the team members, Brian, (who always calls to tell Kurt where they are playing), sent Kurt the following picture by text after the game:




Hoover's Softball Team - Taken Monday, July 25, 2011


We had NO idea they were doing this!  (Yet another moment of tears... I am kind of glad I was not there to see this as I would have been a puddle!)  Again, another act of kindness that I cannot thank them enough for! 

On Monday, August 8th, Kurt (the love of my life) and I will be celebrating our 13th anniversary by heading down for an appointment with the oncologist who is doing this clinical trial.  My oncologist here in Marquette worked directly with the oncologist down in Detroit at Karmanos Cancer Center.  Today I received information from there - mostly told us where to go to get there and also a patient health history form to fill out.  I will post more information on our trip home after meeting with this doctor... hope to have more information on what we can expect!

Detroit Bound for a Clinical Trial? - 7/25/2011

This morning Kurt and I went into the oncology office for blood work and then an appointment to see if I could have my 2nd treatment of Ipi.  All of my blood levels went back up - which was great news!  The nurse practioner said that my oncologist wanted to talk to me as she got results back from the melanoma mutation testing that we have been waiting for.

My doctor came in with a smile on her face and said that my mutation came back as a BRAF mutation.  While she explained this in further detail to us, I understood her explaination but not how to explain it to someone else.  There is currently a clinical trial underway with the doctor that my doctor used to work with.  She would like me to get in on that trial (as it will end in 4-6 weeks and I would not be able to get in until next year then).  So, within the next few weeks, we will be going down to Detroit to start this clinical trial.  While I do not know much yet, I know that it is in pill form (called Vemurafenib) which is currently not FDA approved but they are hoping that it will be by the end of this year.  My doctor did indicate that while Ipi has a 30-40% chance of reacting to the melanoma, this drug currently has a 50-60% chance! 

Kurt asked how long we would need to be down in Detroit and she said that because it is in pill form, they will send us home with pills and I will probably have to go down monthly for check ups.  (So, basically, we should only be down there for a day.)

I had to have an EKG today and will have a CAT scan tomorrow - things that are needed to be sent down to be a part of the trial. 

Glad to hear this promising news!  And, as Kurt said to me, "There ain't no party like a Detroit party!"

Update on Fevers and Treatment #2

First, since I can't remember if I blogged about our trip to the ER on Friday night, I will mention that first. Thursday I saw my oncologist and she suggested switching from tylenol to aleve so I did that night. Friday my temp was constantly running anywhere from 100-102ish. At 5ish, it was running @102 so I took my last Tylenol. About 6:30 and many attempts to lower it, it was 102.6 degrees so Kurt took me to the ER. It took a while to get in and by the time they took my temp, it was 100.6... And I was clammy. My fever broke and by the time we left, my temp was 98.9. Over the weekend, if I had a fever, it was low grade!

On Monday, July 18th, I was back at the oncology office - I was supposed to get my 2nd treatment and find out how blood cultures came back from my appointment last Thursday.
My blood work from in the morning showed that my platelets were too low for treatment so they plan for the second treatment next week. They also said that my magnesium was low so they gave me an IV of that before I left ...and my potassium is still low so I got another prescription for that.

As far as the temps, my doctor seems to think it is just from this treatment and my immune system building/fighting! She seemed to think the weird rash that I had that started around the 3rd of July was from this treatment. (I got an email from a friend who said her mom had a rash start on her ears and went down her body after radiation and her dermatologist said it was from the radiation... So this could have been too as I was just done with radiation shortly before that!)

Hope my platelets go up this week so I can get my second treatment next week!! (Oh, and no temps would be good too!)

Generally Not Feeling Well - 07/15/2011

The week of July 4th I started with a rash that started on my ears and moved down my neck, chest, and down the rest of my body.  It was extremely itchy - not sure if the heat and humidity played a part in making it worse or not but I am glad that it is healing and going away!

Last Saturday night I started running a low grade fever again.  We had a pretty busy Pioneer Days week so Monday we decided that we would just take it easy and lay low.  When I woke up that day, I wasn't feeling well... fever, tired, etc.  So, I slept lots the next few days.  Each night I would wake up and my fever during the night had gotten higher - and I was having low grade fevers during the entire day.  On Thursday (7/14), I finally called my oncologist and went in to see her.  She wanted to check for infections by drawing blood, urine test and chest xray.  She did say that sometimes cancer can cause fevers.  Her office called this morning to let me know that my potassium was low so they have called in some pills to my pharmacy.  We will go back on Monday and I'm scheduled to get my 2nd treatment.

Hopefully these fevers will end soon!

UPside On My Dear Friend, Casey Arkens - Week of 07/04/2011

For those who may not be on facebook, I wanted to share the following link to the TV6 website as my friend/hair stylist/etc., Casey Arkens, was nominated for the UPside:  http://video.wluctv6.com/global/video/flash/popupplayer.asp?vt1=v&clipFormat=flv&clipId1=6019544&at1=Community&h1=The+UPside+7-4&flvUri&partnerclipid&rnd=25093460

This is the information I put on facebook - Thank you to the person who nominated Casey Arkens for the TV6 UPside! I'm thankful to everyone for their support but definitely grateful for Casey's friendship and her smile! (Casey ~ you are SO deserving of this and much more! Definitely made me again shed a tear or two too! Love you!!!)

10 Day Checkup of 1st Treatment - 07/06/2011

Today I had my blood drawn and saw the PA at oncology to check to make sure all my counts are still doing well after being 10 days post-treatment.  Almost all of my counts came back above where they were before treatment.  (They figure they were down a bit because of radiation the week before...)

All in all, I have been feeling pretty well.  The day after treatment I took quite a few naps (totaling about 5 hours total) but not sure if it was due to rainy weather or treatment!  This weekend was also tiring being at my parent's house but it was a lot of fun and relaxing as well!  Got to spend lots of time with family, friences, etc!  One other issue... I have a rash on both of my ears/neck/parts of my face but the PA wasn't sure what it was from exactly - radiation treatment, a change in shampoo due to the halo being on and waiting for the 'holes' to heal or just because I am me and my skin is super-sensitive!  He gave me a prescription to try to relieve the itching and heal it!  I'll start it tonight... or possibly now since I've thought about it!

I'm looking forward to the festivities for Pioneer Days this weekend and spending time with some friends who are here that we haven't seen in at least a few years! 

And then, on Monday, July 18th, I will have blood drawn again and see my oncologist before my 2nd treatment.

1st Treatment Day - 06/27/2011

Today I started my ipi (Yervoy) immunotherapy treatment.  I will take 3 more treatments every 3 weeks.  The treatment itself lasted @90 minutes.

I do have to say that I was a little worried about the soreness of the mediport still although it definitely is getting better every day.  I actually slept on the couch last night and was able to get up by myself - the first day home, I slept on the couch and had to call Kurt out to come and help pull my other arm to get me out of the couch.  I learned to sleep on the recliner the rest of the time.  They first took blood out of the port for my lab work and then they left the needle in so they could just attach the IV to it later. 

We met with a PA from the oncology office before I started treatment.  While we (Kurt and I) both are aware that there is not a cure for stage IV metastic melanoma, they hope to prolong your life.  I didn't really want to hear about all of that right before treatment but that is the information that he went through.  (Of course, this is where I would say that the reason I don't want to hear about it is because I am looking at the optimistic side of things and hoping/praying for a miracle!)

Of course, the PA then went through the same potential side effects that my doctor had already talked about - diarrhea, problems with thyroid or pituatary gland, etc.  They gave me scripts for medications in case I have any problems with nausea, diarrhea, etc. 

We then went into the treatment room.  The staff were very nice!  I didn't feel anything...  It took alittle over 90 minutes and we left and came home after stopping at the pharmacy.
I haven't felt bad at all so far today.  I hope that this continues... and, of course, that this is the miracle drug that everyone talks about!  :)

Radiation "Graduation" and Soreness - 06/24/2011

Today was my last day of radiation on my hip.  They even gave me a diploma!  :)



My Radiation Therapy Treatment Diploma!

 
While it is definitely starting to feel a little bit better, my left upper chest is still quite sore from the incision of the Mediport!  Definitely feeling better than yesterday though - hopefully tomorrow will be even better!

Radiation and a Mediport - 6/22/2011

Yesterday I woke up with a low-grade fever. Before my first radiation appointment for my hip, we called to make sure that I could still come with a temp of 99.3 degrees... It was okay for me to go! With radiation, I go in, they move me around a table so I line up based on the mapping they did last week. Once that is done, they radiate that area and then I am done! It's very quick and you don't feel anything. I've had another radiation appointment today and only two more (one on Thursday and one on Friday).

Today I also got my Mediport put in. I didn't realize that they actually put it under your skin and it goes in a vein by your shoulder/neck. I'm glad it is in as they had to try twice to find a vein for my IV. My veins are getting less cooperative with all of my surgeries, procedures, etc.... And they already weren't very cooperative to begin with!

The procedure was pretty painless until I woke up from the sedation when he was finishing up. Most of it was painfree (like when he was putting in stitches) but I did feel some things before that. I'm alittle sore so I'm sure it'll be more sore tomorrow... just laying low today!

Also found out that I cannot submerge my body in water (besides the shower after it heals) so no swimming for me this summer :(

The rest of this week will be a radiation appointment each day and then Monday will be my treatment and meet with the neurosurgeon and then maybe a rest from the hospital or appointments. It's sad when people like the transporters and nurses know who you are.

Halo and Brain Radiation Done On 6/20/2011 - 6/21/2011

On Monday, June 20th, Kurt and I went in to the hospital for 5:30 a.m.  Approximately 6:15, I had to go down to the holding area of the OR to get another IV and then they brought me in to another area to get the halo put on.  They gave me some sedative but they couldn't give me enough to put me out as I was in a wheelchair.  I don't remember much - but I did feel them screwing in the four screws for the halo.  (And, as you will see from  the picture below, I do remember them putting lots of iodine on my head... can't wait for 24 hours later so I can take a shower and wash my hair!)

From there, I went into a CAT scan with my neurosurgeon (who put the halo on) and then they took me upstairs to the 8th floor to sit around for the day while they mapped the radiation area.  I got up to the room at about 8:15 - I was waiting for Kurt and finally I called him about 20 minutes later.  He didn't expect me to call him!  :)  It wasn't the easiest to sit around as you had the halo on but it wasn't the worst either!  Kurt figured out where to put my pillows to make it more comfortable for me to sit on the bed.  The only problem for me was that I didn't have a lot that I could see because I had to wear my glasses and they would only fit over the halo so I couldn't really see the t.v. which was up above my line of vision with my glasses.  My parents came to visit with us which was nice to 'waste the time' talking and laughing!  I also had a co-worker from work stop by and an old family friend who was there for her dad's surgery.

At @3:45 they came to get me to go down to radiation oncology.  They had to 'plug' me into the table - this is so you don't move at all!  Then they did the radiation which I didn't feel a thing.... they say you won't!  Afterwards, the PA from the neurology office took out the screws on the halo and took it off.  This was the worst part!  I was in some pain at those sites for a little while but by the time I got discharged, I felt fine!  After the treatment and halo removal, we went back to the 8th floor, got my awful IV out (this one was positioned that if I moved my hand, it wouldn't work properly and I could feel it in the vein), got dressed, received discharge instructions and went home!  We got home @ 6:30 p.m.  Made for a very long day - and we were both very exhausted - I got @ a 1 hour nap; Kurt got a little bit of one but he didn't have a bed or a nice chair to lay in!

Not the greatest picture but will show you what was on me for the day!

Once we got home, I got extremely cold and laid on the couch with two blankets.  We took my temperature and sure enough, I was running a temp of 101.0 degrees.  Kurt called the hospital and talked to the PA who said she would call the neurosurgeon.  The doctor called our house and said that if it goes up any more, come to the emergency room - he figures it is just an illness I am getting.  He said to take more tylenol and rest.  So, I did and woke up at 5:30 a.m.  I took my temp which was 98.6 then; this morning it has been running 99.6 and 99.5.  We will have to call and see if I can still have radiation on my hip with a low-grade fever.  I'm guessing we might have to reschedule some of my upcoming appointments but we'll check with all of the offices.

For now, I am just laying low....

A Relaxing Time Before the Start of Radiation Week - 6/19/2011

We left last Tuesday afternoon for a family camping trip.  We thought we would go from Tuesday to Friday and come home for an appointment that afternoon.  We decided when we were there that we were having so much fun that we stayed until Sunday instead!  It was relaxing, we slept well (except for one night) and we had a great time with each other!  It felt like a 'normal' thing we would do each summer - I needed some of that as most of my last two months has NOT  been normal!  I have been weened off one of the two medications I have been on since May 10th.  I am starting to feel less dizzy and much more human again!  (This medication was the one for the brain swelling; I will be on the anti-seizure meds for several months still.)

When we woke up on Tuesday, we weren't sure we would be going.  I've been swelling up a little on my face over the days but that day when I woke up, my face was very swollen as well as my back of my neck.  Kurt told me either I called my doctor's office or he was taking me to the emergency room.  So, I did call my doctor's office and they eventually called back to let me know this is very normal after surgery and it was fine as long as I wasn't running a fever (which I wasn't).  So, we got ready and just as we were getting ready to leave, a package came with a hat that I ordered.  I have been wearing scarves on my head (and while they are not really me, I've gotten kind of used to them but looked forward to wearing a hat).  I was excited to find that the hat that I bought had terry cloth around the band of the hat on the inside and was very comfortable.  So, I wore that all week!  My aunt also brought me a "Fight Like a Girl" pink hat which fit nicely and I wore on Saturday.  And, sortof a funny story to me ... while I was coming out of the bathroom at the campsite, I said hi to two boys who were walking by.  Most kids won't say hi back to me (which I knew but I still said hi to them) and as we walked a little further, I heard the one boy say to the other, "I thought that lady was a guy!"  Of course, Ashley was with me and you could tell that bothered her more than me.  Both of my kids have a hard time when people stare... I expect it but I don't think they understand why people react that way.

On Friday I went to the radiation oncology office to get my hip mapped for radiation.  It took approximately 15 minutes and they basically just mark your skin where they will put the machine for radiation.  I also got three dots of tattoos on my hips.  Kurt was proud that I finally got some "ink" but they look like a freckle! 

Later Friday night we went to the Relay for Life at Al Quaal in Ishpeming.  I've gone for many years but have never stayed for as long as we did this year - we saw them light the luminaries; what an amazingly beautiful sight!  This was also a bit overwhelming as I saw MANY bags decorated in my honor - thank you to everyone who decorated a bag for me!!!!  It was a very nice time for me - the one thing that I find hard about having cancer is that you have cancer!  I remember feeling that way the last time I had cancer.  It's hard to explain but most of the time every day, I am now "Jodi with cancer" instead of just "Jodi".  During the Relay for Life, there are so many people who understand and don't stare or look at you - I felt like I was just "Jodi".  It was very nice to hang out there, chat with co-workers who came to walk, listen to stories from cancer survivors, and finally to talk to another person who also grew up in Gwinn that had cancer that spread to her brain.  While our treatments and cancers are different, we plan to talk!

This next Monday - Friday is radiation week!  We will be spending quite a bit of time at MGH this week.  On Monday, I am having my brain radiation.  We have to be there at 5:30 a.m. and they will put a halo on my head.  I'm not really looking forward to this but know that it is necessary... and from the sounds of it, it won't be as bad as I am preparing for it to be.  After they put the halo on, they will either do an MRI or a CAT scan.  Then the neurosurgeon and the radiation oncologist will do the mapping for my radiation for the brain and I will be sent up to wait in the neuro floor of the hospital until they are done and ready for me to come down.  The brain radiation will then be done and they will take the halo off and I can go home.  They said to expect to stay until at least 5 p.m. or later so we will be there all day.  Tuesday - Friday I will have @ 20 minutes of radiation treatments per day on my hip.  Also, on Wednesday, we will be back there for many hours for the Mediport line to be put in (also something I am not particularly looking forward to but am sure it will be better in the end then continually being picked and IVs put in).  After Friday, radiation treatments will be done.  And, on the next Monday, I will go in for my first immunotherapy treatment.

I thank everyone for the thoughts, prayers, cards, emails - I do think that all of the prayers have been helping!  And, I believe...

Update on Treatment & Radiation - 6/13/2011

This morning Kurt and I met with my oncologist.  I will be going in next Wednesday to get a Mediport put in - this will be put in my chest and will be used for both IVs and blood draws (since my arms are still not healed from both surgeries.)

On Monday, June 27th I will be starting treatments.  She indicated that the drug that I will take (impulimbab - or Yervoy) is actually not considered chemotherapy.  It is basically given by IV (part of the reason for the Mediport) for 90 minutes once every three weeks for 4 times - so for 12 weeks.  It is an immunotherapy drug and basically builds up your immune system to fight the cancer throughout your body.

She indicated that for the most part, the worst symptom of this drug is actually diarrhea.  She also said that a few patients get nauseous but not many.  The only other potential issues that she will be watching is that it can affect either your pituitary gland or thyroid.  If this were to happen, there are medications that they can give for that.
We then went and met with the radiation oncologist.  I will be starting radiation next week on both my brain and my hip.  As he indicated, when they do surgery on your brain, they try to get as much of the tumor as they can without getting too much 'good' brain as that can cause problems.  He asked me a bunch of questions ... what is 3+3 (6); how do you spell 'world' and how do you spell it backwards (dlrow); what is the year (2011); what is the month (June); who is the president (Obama); okay, and the one I couldn't get .... who was the previous president (got it after awhile of thinking and then saying Clinton and then said George W. Bush); he also asked me to remember the colors yellow, red and black and then several minutes later went back and asked what colors he had asked me.  Got those too!  These are all things that can be affected by both the surgery as well as brain radiation over a period of time.  He said if you could do a complex math problem in your head, after surgery/radiation, you might need to do it on paper with a pencil.  He also said it would be liking forgetting were you put your keys, etc.  We did neurological tests like having my move my eyes where his finger moved, touching my finger to his, touching my finger to my nose, lifting my legs, lifting my arms, walking balanced on a line - like a sobriety test, etc.  I think I passed all tests for the most part. 

They are working to schedule this still but the plan is that I will be going in next week to get a halo put on my head and they will then work that day with the neurosurgeon to set up the brain radiation treatment.  That day/night I will then have my the halo removed and the radiation on my brain done.  The brain radiation will be done only once on each of the two spots.  (He indicated that if you have 3 or less spots on the brain, they try to do what they call stereotactic radiation.... focused radiation beams targeting a well-defined tumor with precise treatment set-up to deliver the  radiation to dose to with extreme accuracy to the area of where the tumor was and to kill any cells that may still be in that area.) 

When I had my PET scan, my hip came back with a 'hot' spot.  They sent me for an MRI last Friday to make sure that the hip did not have cancer in it.  See below for picture but they found that the my right hip does indeed have cancer in the muscle and it is now starting to move towards the bone.  They are going to radiate my hip as well.  For the hip, I will have to go for five days at approximately 10-20 minutes each time. 

And, since they gave me a picture of the MRI after my second surgery, I thought I would put this on picture on here as well:

My oncologist and I spoke about when I could go back to work.  Obviously, she gave me a date of October 3rd (since this is when my treatments will be done); I asked if I was feeling okay after treatments if it could be earlier than that.  I guess I will just have to wait and see how I am with the treatment and go from there.  I can't drive anyway but I am sure that I could pay a co-worker to carpool with them!  (And, can you tell that I am anxious to get back to work?  I love my job and definitely want to get back there before October 3rd!  Hopefully I will be able to go back and then take time off for treatments.... that is my goal!  I do know that I need to be healthy and know I couldn't go back yet but I am hoping in the next month or two I will be able to go back!)

The only other thing I was thinking about blogging about is that I haven't drove since Monday, May 9th!  It's weird to to be stuck in your house and not be able to go whenever you want - I miss that!  I've had MANY people offer to take me anywhere and I am greatful ... it's just weird not to be able to be independent!  Plus, I am still not allowed to lift more than 10 pounds - so no hauling anything!  This has also been hard for me.

I am looking forward to tomorrow!  We decided that because appointments are going to be busy for the next few weeks now, we are going to take the kids and either go camping or go somewhere for a few days!  Looking forward to feeling good and hanging out with my family!!!!!

Casey Arkens' Blog About Her Experience With Shaving Her Head - 6/9/2011

Casey is my friend who shaved her head before I went to get my hair cut off!  She had been telling about some of her experiences and I asked if she would blog a story about it.  Here is her story:  (THANK YOU SO MUCH, CASEY!!!!!!!!)



Hello all, my name is Casey.  Jodi and I have been friends for many, many years.  So, not only are we friends; but for those of you who don't know, I am also her hair stylist.

One of my favorite memories with Jodi is the time we decided to go camping at Oscar Lake.  As we were driving out there, we came upon a large tree across the road, and of course, we tried to move it.  It would not budge, so we did what anyone else would have done.  We set up camp right in the middle of the road... a two rut road.  Little did we know this would be a memory to talk about for years!  We had a hilarious time, as you can see from this beautiful picture of Jodi!




Jodi Camping At Oscar Lake - @ 1995


When I heard about Jodi and how her life had changed so monumentally in such a short span of time, I felt shocked... sad... upset.... angry... and then determined to keep a smile on my friends' face and hope in her heart.

Jodi had her first surgery, and with that, half a head of hair removed.  I knew she would be ready to shave the rest off soon.  When she called to ask, I knew there was something I could do to make her smile.  I shaved my hair off before she came in to my shop.  After all, how could I be her hair stylist and tell her, "It's only hair, it will grow back," if I had a full head of hair?  So, off my hair came.  When Jodi and Kurt walked in to the hair shop, there was her smile (Kurt's too) and of course some tears.  It takes incredible courage to sit in the hair chair, in front of the mirror, and watch the rest of your hair come off.  I can only hope having another bald head staring at you in the mirror would make it easier.  So, we had a hair shaving party... Jodi, then Kurt, then John (Jodi's brother) and even Andrew (Jodi's nephew), joined in with a mohawk!  :)

Casey Arkens, Jodi, Kurt, Andrew and John

This is what I did not expect when I cut my hair:

I didn't expect kids I've known their entire life to be scared of me.  I didn't expect them to hide behind their parents when I talked to them.  I wondered, does the short, short hair scare them?  Is it because girls aren't supposed to have hair this short.... or do they think that I am sick??

I knew that women who knew me would show concern.  And they did, asking "Are you okay?" or "What happened to your hair?"  Women that didn't know me, mostly smiled, being curious, I think.  But, what I didn't expect was for them to look away so quickly after they smiled.

I didn't expect just about every man would look away or not even be able to make eye contact with me.  I've talked to many people about this being a hair stylist and all, and I have narrowed it down to two ideas:

- My husband said, "Men are fixers, and if you are sick, they can't fix that, and it makes them uncomfortable."  I understand this thought and let me tell ya, the feeling of being uncomfortable lasts longer for me then it did for them.  And since I am not sick, I can't imagine how much it would hurt if you really were sick.

- One of my clients said, "Please don't take any offense, but some men may think that you are a lesbian and that may make them uncomfortable."  Which I guess if this is true, beware ladies... if you're walking along side of me, people may be thinking something unusual about you too! :)

The only "group" of people who seem to smile or say "hi", no mater what, are the elderly.  And my thoughts on this are, they are wise with their years.  They have seen illness come and go, friends and family come and go, and the compassion shows in their eyes.

With that, what I thought was just going to be a new hairstyle has turned into much more.  It has showed me a glimpse of how Jodi must feel when she walks into a restaurant or goes into a grocery store.  The looks or the no-looks, or the whsipers behind her back.  It hurts my heart because I am not sick, and Jodi is, and that must make all the whispers that much harder.

It got me thinking of the power of a smile.  If everyone could just smile.  How it could change a day?  Brighten a day?  By just a smile?  So, I've started something... a pay it forward... a smile for Jodi.

Wristbands made just for Jodi.  Wristbands that say "A Smile for Jodi."  A reminder to the people who wear them there is power in a smile.  A gift of a smile.  And my hope is that when Jodi walks into a restaurant or goes into a grocery store, she will see friends and strangers wearing her wristbands and she will smile too!

PET Scan Results / Chemo / Radiation - 6/8/2011

I received a voicemail from my neurosurgeon last night regarding the new medications that they have been talking about on the news the past few days.  I called and left him a message today as I was gone for most of yesterday so I didn't get to talk to him.  It's amazing to me how hard they all are working for me - but believe me, I am greatful!!!!

This morning I got a phone call from my oncologist.  My PET scan came back with only the liver melanoma and something in my hip.  I told her that they had indicated from a bone scan in the hospital the first time that I had a stress fracture but she would like me to go in to have an MRI just to make sure.  She indicated that if the MRI comes back with something on the hip, they would do radiation on my hip as well.  The office called and is going to try to get me in either tomorrow or Friday since I see my oncologist on Monday. 

The oncologist indicated that I will be contacted by the radiation oncologist to start brain radiation.  This will start fairly soon.  She also indicated that I will now do the Ipilimumab IV injection instead of the temador pills.  I have an appointment on Monday to see her and will find out then when I will start that.  Basically, that is a 90 minute IV that they inject and then you go back in 3 weeks .

Patiently Awaiting PET Scan Results - 06/06/2011

I called the oncologists' office this afternoon to see if I could get the results from my PET scan last week.  They took a message for the nurse and said they would call me back but I haven't heard from them yet.  Kurt and I both said that we heard from them right away about everything bad so hopefully this is good news. 

As soon I hear about the results, I will post!