Kudos to the KMA Team

Introducing...two very important members of the KMA team that have been with me every step of the way through my treatment.

Karen Leo - Gamma Knife stereo-tactic coordinator

Kelly Forcucci - Neuro Nurse for Dr. Mittal

The Karmanos Team has become as close to me as our family and friends.  They even take my phone calls when they are on vacation. Over the last 16 months, they have provided much more than good medical care and we have shared some good laughs. The pictures above were taken at my 54th birthday party. As you can see, we thoroughly enjoy each other's company. This night in particular was special as it provided an opportunity to shed the usual hospital garb of scrubs and gowns and to see each other all gussied up. Perfect opportunity for them to show that they are as beautiful on the outside as they are on the inside.

Now that the tumor in my liver has increased from 2x2 cm to 5x5 cm, my 3rd IV chemo treatment scheduled for November 16th was cancelled. Additionally, my doctors have advised against proceeding with a 9th gamma knife assisted by Karen or a 3rd craniotomy assisted by Kelly. There will be no other treatments given at this time.

I know you’re sitting there thinking…”What can I do?” I have really appreciated all of the stories that have been shared via email over the last several months. Even though I have not been able to respond to each one individually, know that I have read them all (more than once) and thoroughly enjoyed the trip down memory lane. So…here comes my ‘ask’…do you have more stories to share? Have you held some back? Send them! The addresses are still the same – funny ones to (funnypeggystories@gmail.com) and any other sentiments you would like to express to peggystudz@gmail.com.

-- Peggy

Approaching 2 Anniversaries

Next Tuesday, November 15th, is the one year anniversary of my second craniotomy. Believe it or not, this milestone may be commemorated by having another surgery.  Two cysts have formed around two older brain lesions. Their presence has created swelling and is putting major pressure on the motor and sensory areas of my brain, preventing me from moving independently. Fortunately, they are located in an area of my brain that is resectable and the problem can be resolved by removing them surgically.

The goal is to get me strong enough to have surgery in the next week or so. Ultimately, the decision on whether to proceed with surgery will be based on the following factors:

• Evaluating whether IV chemo has either halted the spread of or shrunk the cancer in my liver.
• Determining that no new areas have been affected.
• Analyzing my white blood cell count to ensure it has rebounded back to a minimum acceptable level after the last round of IV chemo. This minimum level will be critical to helping the brain tissue heal after resection of the cysts and lesions.

I will continue to post updates to the blog as we finalize the game plan. The blog will be my main source of communication. Although I appreciate email, it is currently too much effort to respond individually. Please continue to share comments and support here!

The second anniversary coming up soon is on November 20th. Keith and I will celebrate our 36th wedding anniversary. HOW AWESOME IS THAT!!!!

Happy Halloween!

I am pleased to report that my white blood cell count recovered enough after my first intravenous chemo treatment for me to proceed with the second. I  even managed to do so without disturbing any fellow receivers of treatment - no snoring on my part.  The true blessing is I am tolerating the chemo well with minimal side effects. Less significant, but definitely on my list: a lack of nausea means Halloween treats will be indulged tonight.

Fortunately, I will not be required to go out and scavenge for treats personally.  Although, if I had to obtain my own booty,  I was well equipped for a costume.  Not too many trick-or-treaters possess a full radiation mask like this (picture from May 2012 whole brain radiation treatment cycle).

We Get What We Need

My good fortune continues in my journey to kick melanoma's ass. Of all the places my cancer could have spread to, the liver as a location is preferable to other places such as the bones which are difficult to treat.  This is because:

• Whenever a part of the liver has to be removed, it can regenerate itself.
• Since chemo is processed through the liver, it is easy for chemo drugs to reach this organ.
• You can live with only 10% of your liver function, unlike other organs such as the pancreas. 

As Charlotte Joko Beck (American Zen Teacher and Writer, 1917-2011) once said:

"Life always gives us exactly the teacher we need at every moment.  This includes every mosquito, every misfortune, every red light, every traffic jam, every obnoxious supervisor (or employee), every illness, every loss, every moment of joy or depression, every addiction, every piece of garbage, every breath."

Fortunately I have been a good cancer student. It could even be said  I have been at the top of my class for the last fifteen months.  Next lesson is scheduled for Friday.  I am headed down to Karmanos for Chemo treatment #2.  Thankfully, teachers love students who sleep in class.  Hopefully the other patients have ear plugs so they won't notice my snoring (ha ha)! 

Earplugs All Around

Last week, I began receiving intravenous chemo.  I am happy to report that all the anxiety I was experiencing about this process was baseless.

As is typical, Keith took me down to Karmanos well equipped:

•  laptop loaded with music
• book to read
• noise cancelling headphones
• various food selection to nibble

 I slept through most of my treatment.  Regrettably, those around me operating without the benefit of a mighty team like mine did not enjoy the same peaceful experience.  Apparently, I spent the entire time making my presence known by snoring quite loudly.  Fortunately, when Keith suggested I be woken up to be considerate of the other patients,  the nurses informed him that there were plenty of pairs of earplugs to go around for those within earshot of me.

Another item I a happy to pass on:

The anti-nausea drugs I was given before, during and after treatment are extremely effective - such a blessing!  The biggest side effect I am having is feeling pretty exhausted.  Luckily there is a simple solution to that - more sleep.

Expanding My Treatment Repertoire

One of my daily goals is to stay awake until 9PM.  This typically provides enough time each day to clear an item off my bucket list. Most of the time I can hit the target – as long as:

:

• I hold off having a glass of wine until 8pm
• I take one or two naps during the day (tough – right?)

• I remain realistic about what I want to accomplish

Admittedly, I am not too objective about the last item.  My family, friends and caregivers often challenge my idea of what is a reasonable goal for the day.

One thing everyone seems to agree on is that my infamous ‘drive’ has been a major asset in my cancer fight.  Beginning this Friday, I will be tapping into that ‘drive’ as I add another item to my repertoire: intravenous chemo treatments since the cancer has spread to my liver.

Fortunately, this latest development was detected early via a regularly scheduled body scan, rather than from an onset of physical symptoms.  I feel it is a blessing that there is a treatment option for me and that I will have all the support I need to get through the treatments.

Dancing In September

When I originally pitched throwing a party to celebrate my birthday, I fully intended to have it at our home.   We own 2 tents and have hosted several large gatherings in the past with over 100 guests in attendance - sometimes doing all the cooking ourselves.  As the guest list climbed to record breaking heights, my husband suggested we might want to hold the party elsewhere.  I finally caved in when port-a-potty rentals became part of the mix.   It was the right decision to let someone else be responsible for everything.

This allowed me to focus solely on being a dancing machine. 

Many thanks to all who generously gave donations to St. Augustine / St. Monica (in lieu of gifts as I requested). I am thrilled to report over $2,400 was given  It is my hope to eventually raise enough funds to repair the gym floor to allow youth basketball to be reinstated this fall.

A Birthday Present I Will Gladly Accept

Tomorrow is my birthday.  Last year at this time, I was 5 weeks post craniotomy after my first brain tumor.  My niece was getting married on 9/10 (my actual birthday). My goal was to be able to attend her wedding  and possibly have a glass of wine.  If all caution was going to be thrown into the wind, I going to attempt to hit the dance floor too.  I figured getting out there and 'shaking it' was a sure way to demonstrate how well recovered I was - head included.

This year, as my birthday approached, my family began inquiring how I would like to celebrate the big day.  I honestly could not think of a single thing I wanted or needed - at least in the sense of actual birthday gifts.  However, I was  very much interested in having a party.  It did not matter to me that 54 is not a significant milestone number like 50 or 60.  My continued presence is plenty enough reason for me to whoop it up.

The planning began and the big bash was scheduled for this coming Saturday, September 15th.  I was anticipating a great time as I was enjoying several high functioning days.  Then approximately a week to 10 days ago, I began experiencing the return of several old symptoms.  They were concerning enough for my brain surgeon to attempt to schedule an emergency MRI of my head.  This of course had to occur just before the Labor Day weekend when any appointments would be scarce.  Typical of the fantastic team at Karmanos, I was squeezed in for an MRI last Friday.

I am thrilled to report that I received the good news that a tenth brain tumor (as suspected) was not discovered.  Now that's a birthday present.

Two changes were noted:

• an increase in the edema surrounding my previous tumors.  
• an increase in the size of one of the older tumors.

Fortunately, pumping up my anti-swelling medication should resolve the edema issue and the tumor is not enlarged enough to require immediate attention - just observation.  So the party is on!

Ultimately Super News

On August 17th,  I was removed from the drug study for Vemarafenib.  I no longer qualified to participate because I chose to receive other treatment (whole brain radiation and gamma knife radio-surgery) in addition to taking the medication.  The purpose of the study was to demonstrate that the drug alone was saving the lives of brain cancer patients with a BRAF gene mutation.  (This is the genetic mutation that allows the brain cancer cells to reproduce so rapidly.)  Vemarafenib is a chemo pill that inhibits this function, thus shutting down the ability for the cancer to grow like crazy.

In my case, the drug appears to be able to slow down the process but not entirely prevent the cancer from spreading.  The advantage of being in the study was that I received this extremely expensive drug for free from the manufacturer.  Now I would have to to obtain the drug commercially.  That is once my insurance company was convinced to pay for it.  The process also involved finding a specialty pharmacy that could distribute it and at the same time was authorized by my insurer.  Suffice it to say - major uphill battle.

I was going to run out of the drug supplied by the study this past Saturday.  As of Thursday - despite a MAJOR effort, things did not look encouraging  for the new supply to arrive before then.  But how could Team Studzinski fail with all the extended support it possesses?

I am happy to report my drug arrived on Friday - talk about a Super Day!    Note the proof of our collective super strength below.  Surely this picture provided by the Vieira family of Rhode Island serves as proof of the power of our massive support network.

We remain beyond grateful for every one's contributions: prayers, cards, AND pictures.

Gamma Knife Recovery Progressing

I am happy to report that the pin holes from my last gamma knife procedure are almost completely healed (four pins are drilled into the skull to secure the sterotactic head frame). Not only is this a relief on a physical level, it is a rescue on a fashion level.

While my CVS 'peas' packs were an excellent way to numb my head and alleviate pain, they were not very chic (see above). Rest assured, these were not worn in public, so my reputation as sharp dresser is still in tact.

When I do venture out, I make the most of my phenomenal accessory collection - cute hats (see below), head scarves or my fabulous wig. Frankly, the wig is WAY better than any hair I ever had!  It is almost worth going bald.  Now I understand why wearing a wig was so popular in the sixties - kick ass hair without any effort.

Reminder to Have Fun

Clearly our friends Harry and Mary Brookes had the  concept of ' Go Big or Go Home' in mind when they created our Christmas card for this year (pictured at left).  They decided it was unnecessary to wait until December to 'send' it - not because they are under the impression that I won't be here to receive it - but to demonstrate they are actively embracing the concept of  HAVE FUN NOW!

Here is proof of my compliance below.

 



 

KMA for a Year Now (8/3/11 - 8/3/12)

Friday is the one year anniversary of the discovery of brain tumor #1.  Ironically, I will be undergoing gamma knife radio-surgery for the 5th time that day. An 8th and 9th tumor (which we have been monitoring since their appearance in June) have increased in size enough to require some action. 


It seems the tumor gods did not consult my suggestion list for how I intended to celebrate the fact that I have far exceeded the typical 3 - 6 month post diagnosis survival time. Rest assured, the "I am still alive and kicking" celebration will still occur.  It is merely being delayed.

Since every obstacle, in life presents an opportunity to improve our condition, the extra time between the end of this week and when I am back on my feet again will allow me to come up with something extra cool to do!

Introducing the Players

Since I always enjoy having a face to go with a name, I thought I'd provide a picture of the folks who have expended a large amount of time and energy trying to keep me around this past year.  

The gentleman in the first photo is my oncologist, Dr. Lawrence Flaherty. 

In this next picture, my brain surgeon, Dr. Mittal is standing to the right of me.

 The woman pictured on the left is his PA Karen Nichols - a woman very integral to both him and me.  

This way you will still recognize all of them (even if you don't recall their names) when you see them depicted in an article sometime in the future when they are interviewed about Peggy Tomaszewski Studzinski - this woman from Detroit who managed to outlive all typical time frames for people with stage 4 brain cancer.

Ah yes, notice the maiden name.  I didn't just gain the stubborn Polish attitude via thirty some years of marriage.  I possessed it before hand at a full 100 percent.   My mother was a Kosinki,  Her mother was an Ostrowski.  My father's mother was a Surbinski.  Shall I go on?

Final tidbit:  My radiation team - Peter and Claudia were also Polish.  This fact was quickly established when they pronounced my last name as "stew-jean-ski" when they called me back for treatment.on the first day of my whole brain radiation.

Anyway,  I am unsure whether the Polish heritage is a factor or not.  I'll leave that to the writer of the research article for crazy long cancer survivors to speculate over.  Whose to say why three to six months has become a year? 


I'm going with my new word to self-describe:  It's because I'm pertinacious.  FYI: It is defined as dogged - persistent - obstinate - tenacious.  Hhhmm, sounds like a stubborn Polish woman to me,  but one with a load of prayers backing her up.  Thank you for those.     

Beyond Explanation

When Karmanos called to confirm an appointment I had in May, they were surprised to hear I was actually coming in for it. Note: I was too ill to even attend the previous appointment.  Keith and Melissa went downtown without me to discuss my status.  The general consensus was that I had about 10 days left based on how poorly I was doing at the time (unable to walk independently, feed myself, remain alert, etc).

The current appointment quite frankly, was scheduled merely as a “courtesy” since it was not anticipated that I would even be present for it.  After learning that I not only intended on coming downtown, but that I had in fact regained most of my ability to function again, my neurosurgeon, Dr. Mittal, and my oncologist, Dr. Flaherty scheduled a MRI and body scans.

They were astonished to see the results.  The MRI showed significant changes in my latest brain tumor.  Previously measuring 5.1 cm x 4.1 cm, my seventh tumor now measured only 3.4 cm by 3.7 cm.  On top of that, the other issues (new cancer outside a cyst that was surrounding the newest brain tumor and the related swelling), were dissipating.

What is the possible explanation for such an amazing turnaround?  The answer is that we are not even going to attempt to understand the ‘almost impossible’ at this point.

I have a plaque my sister-in-law Monica gave me that says, “The most astonishing thing about miracles is that they happen.”  So Team Studzinski is happy to simply continue to believe in miracles.

I have been supplied with another month’s worth of the chemo drug (which appears to have bought me some additional unexpected time now that the whole brain radiation appears to have kicked in and provided a reprieve ).  I expect to show up at the next appointment to demonstrate we can KMA for a little while longer.

So for those of you who were thinking about having to remove me from your Christmas card list this year, THINK AGAIN.

Update Coming Soon - PROMISE!

Sorry for the delay in any blog postings for a while.  I was going to claim that I was experiencing some "technical difficulties" as a defense  - but I can not fib.  Quite frankly, the truth is that I am following my own credo of living in the moment and have been enjoying  a steady round of visits with friends and family.  I hope everyone has done the same and spent the holiday with all their loved ones.

A Welcome Change of Focus

While Melissa's boyfriend was here for a visit in April, he asked Keith for his blessing to propose to our daughter.  On his next visit here on May 18th, he asked Melissa to marry him (FYI: this is Keith's birthday - best birthday present ever as we love him).

We agonized for about a week over what to do next.

• Should we try to throw a wedding together ASAP while I am still here to be present?
• If we go for it and I crash, do we just cancel at the last minute?
• Should we just throw a big party to celebrate the engagement?
• If we decide against proceeding with a quick wedding, will we regret not trying when my anticipated departure is delayed?

We decided to follow our own advice to stop planning and start executing.

MELISSA AND ANDY WERE MARRIED THIS PAST FRIDAY (June 15th).  Such a nice turn of events.  The wedding was held in the evening at the Detroit Golf Club and we are happy to share some photographs of the evening.


Yes, we planned and pulled off a wedding in less than three weeks - just another demonstration that you can do anything you set your mind to baby.

 

It Pays to be Relentless!

Story 728: 12 years ago when I was a student at OU, we frequently congregated at the Rio Bravo Cantina across the street from campus (killer deal for free appetizers during Happy Hour).  On a Friday night in the middle of winter, I arrive home from the bar and discover my mom’s tennis bracelet is missing.  Naturally, I am upset at the loss.  Imagine my frustration when I recall how the bracelet kept 'catching' when I removed my coat that day several times between my 3 classes.

As you all know, once I have my mind set on something, I won’t give up. I was determined to find this bracelet. I would arrive early to my 8 AM class on M/W/F, to comb the parking area before others arrived to park.  I began at one end of the lot shifting over by 6-12” at a time.

During my quest, I became best friends with the Lost & Found as I turned in all the various shiny objects I kept recovering (including numerous silver gum wrappers that I eventually learned to stop running towards with excitement).  Three weeks later, I found the bracelet at the end of the lot gleaming atop a snow bank where a plow must have placed it after scooping it up.  This too was a true blessing since it was not sitting on the ground between parked cars where someone would have been much more likely to find it.  The bracelet was broken, but all the stones were intact.  It pays to be relentless!

I was reminded about this as I just got the bracelet back from the jeweler from having it completely reset to something more suitable for someone like me.

EDIT: - Here is further detail an to provide some clarification based on a response comment - although I love the way 'Anonymous' thinks ( Tiara!) I am unsure if the comment maker knew when asked what "I do, " I have often indicated that surely they heard I was the 'Goddess of one thing or another (i.e. the  universe,  etc.) 

The design of the setting for my mom's tennis bracelet was 'delicate' and the baskets which held the diamonds were linked in a way that made the bracelet very flexible but highly susceptible to snapping between each stone (which is how I lost it).  The new setting is 'sturdy'.

Cherishing the stories

Stupendous job on sharing your memories thus far!

So many of you indicated you were hesitant to pass on a story because you thought it wasn't "funny enough." Please realize whatever you choose to contribute can be based on any sentiment. There is no "humor requirement."

Simple recaps of our interactions have been meaningful. I had either completely forgotten them OR you provided an entirely different perspective from mine.

Know that we have spent many hours reading, rereading and smiling/laughing/crying.

So for those of you that have yet to send something in, don't be shy!  The only thing you may want to consider, at least in my opinion, is to suck up to me. Remember, I am headed to a place where there is major potential for what can only be categorized as "upside" for my posse of family, friends and loved ones. Having me on the "inside" looking out for all of you has to be an advantage.

Even if you can't amuse me with a story, you should at a minimum inflate my ego by recounting how I [insert some exaggerated premise].

Since it is already established how relentless I can be (especially when I am focused on a goal), you might want me at the door as a wing-man in case you need assistance either with line-jumping or admission when it is time for you to join the eternal party.

Keep those stories coming!

Sheer Pleasure

As I spend precious time with my family, I have received such lovely gifts.  Packages have arrived from coast to coast, each containing unique items such as ‘hardware’ from New York (see below), tasty baked goods and farmer’s market selections from Minneapolis, artisan chocolates from San Francisco, and favorite wines from everywhere.  

The only drawback is the time spent indulging in these items has distracted me from posting to the blog.

My apologies.

“Enjoying” the gifts faster might save time, but would pose a challenge to the fine balance of alcohol consumption vs. seizure threshold.  But don’t feel sorry for me, as I am up to task of mastering this balancing act.  Plus the wine shop closest to our home is enjoying a surge in sales, and given the current economy we would hate to spoil this for them.

I am thrilled to report an amazing upswing on the symptom roller coaster.  Quite frankly, while the recent free fall was scary it provided a needed refocus: SEIZE NOT JUST EACH DAY ACTIVELY  - BUT EACH IDEA.   I was beginning to hesitate if an idea seemed a little too excessive in combination or I had more than one per day.  Hello - is there a one per customer per day limit?

And there is a silver lining in the timing of this entire process.   Everyone knows what a massive role my yard and gardens play in my life. So how lucky am I that we are currently in the full growth season of late spring rather than the winter here in Michigan?

Something new comes into bloom in my garden each week.  I indicate which current showpiece should be clipped and I then revel in creating a flower arrangement in a vase.  Now all the family here can benefit from my labor of love.

Because there are too many flowers for just my household - all gardeners are guilty of this - I would take arrangements to work. In 2011, I was pleased to be able to cover the commercial loan operation department of about twelve to fifteen gals despite the tumor madness.

Here is a sample of the latest bloom. 

An-ti-ci-pa-a-a-a-a-a-tion

All right people, I am shocked that I haven’t been inundated with stories. I thought for sure I would have to hire 3 book editors to sort through them all!  Hmm…maybe I’m not that funny... maybe I’m not that nice…maybe nobody likes me. All kidding aside, I will enjoy any and all threads of the great memories we have shared together. Don’t feel pressure to be ‘funny’. If it makes you smile or chuckle, send it in!

I am going to get things started by sharing a selection of tales that are quintessentially 'me.'

Story #1: 38 years ago, I was trying to get my future husband to notice me, but he wouldn’t get his head out of his car. This blew my mind.  Fast forward, I eventually got Keith to be aware of my presence and ask me out on a date. One night, we were driving around drinking beer and I realized I was going to 'hoolio.'  Regrettably, he couldn’t stop the car fast enough. I left an indelible impression on the interior, especially the doors that were lined with shaggy, fake fur. Eventually, I made it up to him by having that car restored. The doors are now lined with leather (not that I require an easily cleanable fabric these days).

Now it’s your turn…don’t make me beg

• funnypeggystories@gmail.com
• peggystudz@gmail.com