audra’s Story

Site created on February 22, 2009

I am being treated for a Recurrent Grade 3 Anaplastic Pleomorphic Xanthoastrocytoma (PXA) Rare Brain Tumor.  

MY WORDS TO LIVE BY:

Good and Bad things

Happen in Life what Matters

What Defines us

Is How we Handle Them



I am 49, married to Tim for the past 27 yrs with 2 beautiful daughters, Rachel and Courtney. I live in central Minnesota and am a High Risk Labor & Delivery Registered Nurse.

Well, here is my story...It began with a grand mal seizure in 1996 when I was 29. This is when the doctors feel my tumor was starting to form. Nothing much happened until I started having headaches in 2000.  Well, after many MRI's , seeing something suspicious in Oct, 2000 and doing the Watch and Wait game....my neurosurgeon Dr Bottini decided to remove the tumor in June 2001. He said, "I needed surgery like I needed a hole in my head." That's a brain surgeons humor for you..Ha Ha! They were able to remove the entire tumor.  They called my tumor an Oligodendroglioma (brain tumors always have long, funny names.) My Mayo pathologists now believe it was a PXA Rare tumor to begin with. It only takes one microscopic cell for a tumor to recur. I did very well for quite a while, until I started having simple focal seizures in 2006. This meant more MRI's and there that tumor was again..in the same spot.  It hangs out in my right temporal-parietal lobes in the sylvian fissure..yada yada..or about 2 inches above my right ear. Luckily, the tumor lives very near my skull. They open me up and BAM.....it's right there!! I had my second surgery Feb, 2007. Even though I had a world class Mayo Clinic neurosurgeon do my surgery..he was unable to remove the entire tumor. You see, brain tumors tend to get these little extensions from the main tumor that are like fingers. I had one that wrapped itself around a blood vessel..an important one..and my surgeon was only able to scrape away what he could, but unable to remove it. It was described to me as "leather-like." Pathology reclassified my tumor as a Grade II PXA (short form)..or a Pleomorphic Xanthoastrocytoma. Isn't that a mouthful!A PXA is a fairly rare tumor. It was first discovered in 1979.  Everything I have read says surgical removal is the "best" cure for this type of tumor.  Because of the rarity of my tumor I am continuing all my care and treatment at the Mayo clinic. I am just fine with that since they have been #1 in the nation in neurosurgery and the neurosciences for like 20+ years-(per US World News and Report.) Luckily Rochester is a mere 3.5 hours away..Well worth the drive and I get tests, results and a plan all in the same visit. I have a team of great doctors there. So fortunate! Following surgery I had 6 weeks of radiation at the Mayo Clinic. I tolerated it pretty well..slightly nauseated and just got progressively tired. As far as hair loss..well, lets just say it was about 1/4 of my hair..gone! Started losing it about 2 weeks into treatment and continued to lose about 2 weeks after treatment ended. Luckily I have long hair and was able to cover up my bald spot. I lost so much because my tumor is so close to my scalp...lot of damaged hair follicles. The hair didn't all come back...but most of it.  They said it would grow back slower than normal..I am just glad it grew back!!! I was fortunate enough to stay at the American Cancer Society's Hope Lodge throughout my treatment. It was an incredible experience since I met people from all over the country there..everyone fighting for their health...everyone very special. When I think about my time there, this quote comes to my mind.."Life isn't about waiting for the Storm to Pass...It's about learning to Dance in the Rain"Radiation didn't eliminate my tumor..so we had been "watching" it. My tumor started to grow again in Dec. 2008 and more growth seen on my MRI in Feb.2009.   A couple little cysts had formed too.  We tried 2 cycles of an oral chemo drug called Temodar, but the tumor grew despite that.  I had my 3rd surgery on May 14, 2009 and had the best news of all...They got the whole tumor...yes, the entire thing!Tumor free!!! Miracles Do Happen! The blood vessel that the tumor was wrapped around formed a new pathway and they were able to safely remove the whole tumor. The tumor pathology showed cells that were becoming more aggressive, Grade III Anaplastic PXA. After recovering from surgery I was started on an oral chemo called CCNU.  It started causing some lung problems for me, so I was only able to go thru 3 of my 6 treatments. I was doing well until a very unexpected grand mal seizure Jan, 2012.  Enhancement was seen on my MRI at my tumor site! So that means there was extra blood flow there. The enhancement slowly disappeared  over the next 20 months.Yeah! Just when I thought I was out of the woods I had another seizure Dec 4, 2013, this one took me for a tumble down the stairs. My MRI looked clear~whew. But I have had some residual respiratory issues from my previous chemo I am being treated for. July 2014 the MRI looked very suspicious for tumor regrowth :(  That would explain the seizures!! These types of tumors seem to always present with a grand mal seizure. I had a repeat MRI in September which again showed growth. The tumor moved just slightly and has now shifted to the parietal/frontal lobe of my brain. It is still near the skull surface, so remains easy to get to, but it is near some major blood vessels that control movement and this tumor type likes to "stick" to blood vessels and grow with the blood supply. I had my 4th surgery on Oct 24, 2014 with complete tumor removal and got my loose screws fixed too (yes, I seriously had a couple loose screws!) There was no blood vessel involvement this time...Yeah! I made Mayo Clinic history and was out of the hospital and was the first patient discharged straight from the ICU in less than 24 hours after having brain surgery!! My body just knows how to do this I guess. The pathology remained Grade III Anaplastic PXA but had a high mitotic index. So, that basically means my tumor is more likely, yes...more likely to come back...and given it's history...it probably will if we don't do anything about it.  So this begs, "just how many times could I do surgery?" My neurosurgeon Dr. Marsh said we can keep doing surgery as many times as I need to as long as it is safe to do. The Radiation oncologists at Mayo said it was too soon to re-irradiate that area. Bummer...because surgery is the best treatment for this tumor and radiation is the next best thing to stop it in it's tracks.  We need to "kick it while it's down" as Dr Buckner,my Neuro-Oncologist, has said.  The next plan of attack was a combination chemotherapy treatment of 3 chemo drugs: Procarbazine, CCNU, Vincristine...Or PCV with start date Dec 8, 2014.  The goal was to do 6 cycles of this intense treatment. Each cycle is 8 weeks long. I have been told most people are able to make it thru 4 cycles. Everyone's body responds different to chemotherapy so it's hard to predict! Well, I didn't make it too far for a variety of reasons. We had to stop the Vincristine into round 2 due to increasing Peripheral Neuropathy. The Procarbazine took me to the ER with a full body rash in round 3~ so that would now be #23 to my long list of allergies ( Yes, you read that right...23!)

They keep a very watchful eye on me and I am grateful for that. My MRI on March 25th, 2015 showed new areas of cystic-type lesions with surrounding peripheral enhancement at my previous tumor site ... These were not there on my MRI scan just 2 months before! Dang!!! MRI scan was repeated May 6th....that day Dr. Buckner said "the pictures say it all," as we looked at my past 3 scans together on the screen there was double the growth! So obviously the chemo plan I was on did not work for my tumor! For the fifth time in the past 15 years of my life in comes my neurosurgeon to discuss brain tumor removal! Whew! There are so many promising advances happening in the brain cancer world, and clinical trials abound! Going into this appointment I had already researched thoroughly a measles vaccine trial being done at Mayo Clinic that I was hoping to qualify for. Unfortunately because my tumor had progressively made so many changes over the past 15 years I didn't qualify for that one. So onward and my 5th surgery in 15 years was appropriately scheduled for 05~05~15! I was so happy to have Dr. Marsh do my surgery again. Dr. Buckner said there is a definite advantage to having someone go in who has been there before..He's getting to know the inside of my brain extremely well! My tumor had moved a bit more to the frontal lobe but he was still able to go thru the same area as my previous surgeries but needed to reinforce now with bars instead of just plates and screws! (You can literally see them because my skin has become so thin in that area...not very pretty!) The good news: all the tumor was removed again! I had to stay for 2 nights this time as I showed a little seizure activity (slurred speech and drooping lip a couple times but both resolved.) More good news: pathology has improved and we know my tumor harbors the V600e BRAF mutation (so we know how to better treat it when it decides to return.) Making Mayo Clinic history again, I was selected to be the first patient treated with both standard radiation in 2007 and their new Proton Beam Radiation (aka: Ray of Hope!) I had 20 treatments July 13~August 7th, 2015 along with Avastin treatment to control any swelling because I'm allergic to steroids! I also received a week of Scrambler/Calmare treatment for my peripheral neuropathy- it really helped-I went from dropping things with numb fingers and burning toes to full feeling again-just some residual tingling now. I was blessed to stay again at Hope Lodge and make more lifetime friends. I made quite a news splash while there one night in Rochester: assisting a laboring mom crying out for help who se baby was crowning just outside the Mayo clinic! It was a healthy 36 week baby. I was in the right place at the right time! A gift from God, as it may certainly have been my last delivery!

My MRI scans following proton beam radiation in Sept., Nov., and most recently Feb. 22, 2016 have all been showing normal post radiation changes and thankfully no tumor! Plan is for continued MRI scans every 3 months!

With all of these treatments obviously comes side effects, it's just the trade-off a cancer patient must accept. So what are mine at this time??? All that radiation to my head has left me a permanent very bald spot about 4 inches in diameter (but I can still cover with the hair I am blessed with and hats...lots of hats!) Peripheral neuropathy with tingling in my fingertips still lingers, but quite manageable. I've had some speech issues sometimes stammering if I get anxious and my R's and S's roll a bit when I talk too fast! I've always been a stickler for correct pronunciation, so this is a little frustrating for me personally but most people wouldn't notice it even happens. The speech issues are probably small seizure like activity as well frequent chill like sensations I get daily...so seizure meds for Life it is! I have mild toxicity of both liver and lungs. I've been worked up thoroughly for these and monitoring will continue as it can progress for years, but of course hoping it all improves rather than worsens. This is from the chemo drug CCNU I took in 2009 and 2014~15.


But truly...if you met me for the first time you would never know that any of the above story had ever, ever happened. Actually, many people who even know me are quite surprised to hear the details and extent. I am grateful to be able to Live Life and following a new path in life becoming an advocate for brain cancer! I believe I am here to shed a positive light on Cancer and give Hope!


I get my strength from my Mother....she was diagnosed at age 42 with breast cancer and over the coarse of 12 years with multiple metastasis to just about everywhere in her body. She had multiple surgeries, radiation and chemo treatments. She said she "just didn't want it to go to her brain."  Ironic, but I gladly take the brain tumor my mother did not want.  I know she is constantly watching over me!

With HOPE all things are possible!Thanks for thinking of me today!

Newest Update

Journal entry by audra popp

Audra peacefully passed away on Monday, Nov. 22 surrounded by family and prayer. Details for her visitation and service are below along with a link to the service livestream for those unable to attend. 



https://youtu.be/72ghYD7OIxU
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