Back At Home

Talked to mom & dad on their way home from Karmanos. Everything went smoothly today. A nap is definitely on the agenda for the afternoon.

Thanks in advance to the members of Peggy's posse that will be helping out over the next few days and nights!

-Melissa

Thank Goodness Keith is Part of Team Studzinski

Imagine my surprise last Monday when I met with my brain surgeon and I learned that I actually have two new brain tumors.  Both are located near the hippocampus.  The one on the right side is about 1 cm and the one on the left side is approximately 6 mm.

Dr. Mittal  recommended using gamma knife to get rid of them rather than 1) resecting them - as a third craniotomy in such a short time is not advised.  2) treating them with whole brain radiation since this represents the trump card he would like to save until necessary.

When I met with my oncologist on Tuesday, he indicated that it is time to "stop chasing the tumors" and the best course of action would be to "get ahead of the tumors".  My options to do so would involve using whole brain radiation (which would potentially destroy the other cancer cells that are present but not yet visible) or to begin taking the drug Vemurafinib - which the FDA just approved last August (to shrink the present tumors and inhibit the growth of new ones).

When Keith asked what Dr. Flaherty what he would do if it was his wife in my situation, he said he would have her take the drug.

The thing that causes the most concern about selecting to take the drug as treatment is the size of the larger tumor.  At 1 cm, it is already at the size limit for successful treatment via gamma knife radiosurgery.  Since it will take a few weeks to navigate the protocol required to receive the cancer drug, and because the tumor grew to this size in only 4 weeks, there is the possibility that the tumor will become so large it would have to be resected via craniotomy in the future.

The catch 22 is that you can't qualify for the drug unless you have a brain tumor of at least 5 mm.  In a perfect world, we would destroy the current tumors and take the drug to prevent new ones.  However, the only way to tell if the drug works for me is to witness the shrinking of the tumors.

My brilliant husband proposed the following: could we gamma knife only the large tumor to eliminate the worry?  Thereby leaving the smaller one to keep me eligible for the clinical trial for Vemurafinib.  Dr. Flaherty agreed to discuss it with Dr. Mittal, who not only concurred, but presented the idea to the tumor board who approved the idea.

Therefore, I have already signed the paperwork to be in the current research study for Vemurafinib (hopefully I can obtain the drug within a few weeks) and I will be at Karmanos at 6 AM on Tuesday to receive gamma knife on my larger tumor. 

It's wonderful to have options as I make this journey and a blessing to have people to support us through this difficult time.  Winston Churchill said: "If you are going through hell, keep going."  Melanoma better get out of the way because I'm still coming.

Game Plan In Development

Just wanted to give everyone an update on where things stand with Peggy.

As noted in Friday's post, the melanoma is back and continues to be aggressive. Peggy's care team wants to devise an appropriately aggressive response. There are a couple of different scenarios being considered.

Peggy's case was presented on Wednesday at the weekly tumor board meeting. This will ensure her care team develops the best possible game plan. They expect to provide a recommendation between Friday and Monday.

Stay tuned.
-Keith & Melissa

Third Time is a Charm?

I received a call on Friday from Dr. Mittal's office (my brain surgeon).  They were contacting me to let me know ahead of my appointment on Monday morning that a new lesion was found.  The intent of the phone call was to give me the weekend to digest this latest development.  I will find out on Monday morning what my treatment options are and other details.

Due to the shock of the news (as this tumor was not present 4 weeks ago I when I was in the ER on 12/23 and I received an MRI), I can not recall anything else - like where in my brain the new tumor is located - other than the fact it is smaller than 1 centimeter (which is good news).

I just wanted to give everyone a heads up rather than wait to pass on the news on Monday or Tuesday.  Thank goodness we decided to go ahead with another MRI on 1/17, despite the fact that the the MRI in December only showed some remaining swelling around the last tumor.  I'm glad we caught this tumor early!

I am scheduled to meet with Dr. Flaherty (my oncologist) on Tues afternoon to get the results of my chest, abdomen and pelvic scans.  Although, it is possible that Dr. Mittal will be in contact with Dr. Flaherty (rather than waiting to get the scan results until the following day) since any course of treatment will most likely hinge on whether the cancer has spread to other areas - hopefully not.


Mignon McLaughlin (an American journalist who passed away in the eighties and was known for her quotes) said; "The only course that matters is the kind that gets you from one moment to the next."  We are still going to take everything one day at a time and I plan to continue to showing cancer who is more stubborn and persistent.


I'll send out another post once we figure out a next step for KMA!

Emulating 'Arnie'

  

In  'Kindergarten Cop,' Arnold Schwarzenegger goes undercover as a school teacher.  In one scene, he has the following interaction with one of his students:  

Kindergartener: "What's the matter?"

Arnold: "Oh, I have a headache."

Kindergartener: "It might be a tumor."

Arnold: "It's not a toomah. It's not a toomah at all!"

This sounds a lot like me.  I've inserted a few excerpts of an email exchange to a friend that occurred just days before I went to the emergency room back in August.  We were trying to schedule having dinner together.

Email from 8/1/11

any other of the next few Fridays should be fine

unless I get some bad news this week regarding my head - which honestly is not what I expect

had blood pressure checked to insure there was no risk of imminent stroke (all clear)

more concerned they will continue to say they have no idea of the cause of the headache

therefore no suggestion to get rid of it

(tried everything known to man: advil, tylenol, excedrin for headaches, etc)

nothing works (not even drinking lots of wine)

it's getting old & making me slightly crabby after all these weeks

Email from 8/2/11

"honestly not the end of the world re: headache - mind over matter - nothing I can't handle - just too long a time frame to continue to conquer with a 'positive outlook' at this point. OH WELL, AT LEAST IT'S NOT SOMETHING SCARY LIKE BRAIN CANCER OR A TUMOR or an aneurysm - I think anyway ......"


We all know how wrong I was in this regard.

In Terminator 1, Arnold Schwarzenegger promises "I'll be back."  On my last day at work before my second craniotomy, I assured my co-workers in Commercial Loan Operations of the same thing.  The good news is that this time I was not mistaken. 

I am happy to report that despite experiencing a few delays back in December, I returned to work last Friday.

The next big event occurs on Tuesday the 24th when I receive the results of my latest body scans and MRI which I am having done tomorrow.

The End of 'Driving Miss Peggy'

Now that I haven't had a dizzy spell or experienced a spinning sensation for about a week, I have been given permission to begin driving again.  Because I have only driven for approximately 6 weeks in over 5 months, I needed someone to accompany me for the first few days to ensure I could handle being behind the wheel.

Keith has never been thrilled to be a passenger in a car but he did go out for a few trial runs with me this weekend to evaluate my driving.  Since I performed at an acceptable level (was actually credited for doing a good job - although I still brake later than he would like), it will no longer be necessary for folks to chauffeur me around.  I have to admit I will miss someone going out to start the car to warm it up for me, and being dropped off and picked up at the door, but it will be outweighed by my returned sense of freedom.

For the immediate future, I will have to be cognizant of the numbness level of my extremities (hard to feel the gas pedal and brake when your foot is numb).  I will also have to continue to monitor myself for the return of any spinning or dizzy spells.  If I remain symptom free, my first day back to work is slated for January 13th.  Yes that is Friday the 13th, but I am feeling quite lucky - and richly blessed.

Independence Day

Everyone who knows me would not be shocked to hear I want to be in charge of my day-to-day life. This is not a new phenomenon.  Frequently, a struggle exists between myself, and my husband and daughter, who have insinuated that my memory is "convenient" and I only recall things that fit my agenda.  On occasion, my family finds my recall to be somewhat amusing.

Example: While in the hospital after my second craniotomy, one of my nurses was named Hope.  At a certain point, I inquired how much notice Hope would need to assist me in going to the bathroom.  She appeared confused by the question.  She then indicated I only needed to push the buzzer and she would come help me.

I elaborated that I didn't want to wait until the last minute because it would take some time to unhook everything before I could proceed to the restroom.  Next, Hope informed me that I would not be getting out of bed and going to the restroom.  Rather, she would provide a bedpan.  This made me very unhappy.  By the way, after my first craniotomy I did use a catheter, but otherwise absolutely insisted on going to the restroom to use the toilet.

Per Keith and Melissa, I then responded I would just “hold it” and wait until I was allowed to get out of bed.  Additionally, I retorted (in the nicest way of course), "I thought your name was Hope but you are actually not Hope.  You're Hopeless."  Snap.  Although, this comment did not seem to ruffle Nurse Hope one bit.  

Conveniently, I did not recall this exchange until my family reminded me of it. In other instances, Keith and Melissa insist that I twist what the doctor says to fit my own desired outcome. They are quick to provide me with 'clarification' or don't hesitate to tell me, "That is NOT what the doctor told you."

Well, I am happy to report that both my neurosurgeon and my oncologist have indicated

• I no longer require around-the-clock supervision.
• I can try driving again. 
• I can return to work part-time, at the end of next week.  

As this is absolutely factual, and not an elucidation on my part, I am thrilled!