08.22.10: SURPRISING DEVELOPMENTS

Dear Readers:

I regret to deliver unpleasant news. I have not written in the last couple of days because of surprising developments that have arised as a result of Trinity's second surgery just 10 days ago. The team of doctors at UCSF got together earlier this week and examined the tumor that was removed from Trin's brain. Then on Friday, they called her in for an appointment to personally deliver the news. During this meeting, doctors informed Trinity that her brain tumor has developed into Stage 3 Cancer.

The type of tumor Trinity has is called a Mixed Oligoastrocytoma Grade III. Only 1 in 100,000 people get it and there's nothing that causes it - it just happens. The median age for someone to be diagnosed with oligoastrocytoma is 42 years old; Trinity is just 27. Symptoms of this type of tumor are headaches, seizures, and motor changes - all of which Trin has suffered.

Thankfully, the surgeons removed as much of the tumor as possible without disturbing eloquent regions of Trin's brain (speech/motor cortex) and other critical brain structure. She will continue to undergo subsequent MRI exams for the rest of her life to monitor the resection cavity. Even after surgery, an oligoastrocytoma may recur. Treatment for a recurring brain tumor may include surgical resection down the road - but as of now doctors have scheduled Trin to begin chemo and radiation therapy in 6 weeks.

We've told Trin that we will shave our heads with her if she stands to lose the rest of what hair she has left as a result of therapy. Even better, doctors have informed Trin that they can harvest her eggs if necessary so she can eventually have children, despite the potentially damaging effects of therapy. And since it's a medical issue, her insurance will likely pay the rental fee to hold her eggs in storage.

Survival time of this type of brain tumor varies. Experts say a younger age is one proven factor in improved survival time. Since Trin is young and in otherwise good health, we have reason to believe that she is off to a great recovery since the odds (and faith) are on her side!

We continue to be inspired by Trinity's determination - and we know that God will not give her more than she can handle! She's a pillar of strength and example for all of us to appreciate one-another and not to take anything for granted... life can change so quickly overnight. We love you Trinity!!! Stay strong sister!!! <3

Faithfully,

Nazy

08.18.10: MOVING FORWARD

Hello Friends,

We are still at our apartment in San Francisco and things are going well. Trinity is beginning to move forward and make significant progress. She will speak with the oncologist tomorrow after the board of doctors reviews her case. She will likely then schedule an appointment to go in and find out what grade of tumor she has. Based on results, we are in positive spirits that results will come back in Trinity's favor.

More good news...doctors say Trinity doesn't have to take vicodin anymore for pain, she can simply take over-the-counter Tylenol. She took Excedrin the first time around after surgery for the pain too. I'm telling you --- this woman is savage! :) She's SO STRONG! Furthermore, Trin's healing very well and doctors have informed us that she can go into the hospital on Monday to have the staples removed from her scalp. It's amazing how resilient the body is.

Alright well that's my update for now. We're enjoying this city weather and may go down to Ocean Beach a little later to get out of the house; it's only a few blocks away from where we are staying on 18th and Kirkham. Have a great Wednesday friends!

Positively,
Nazy

08.17.10: GETTING OUTDOORS

Trin's doctors have encouraged her to practice walking as much as possible to rehabilitate her left side. Because the brain tumor was deep inside the inner right side of Trin's brain, the motor skills on her left side had a chance of being affected post-op even to the point of paralysis. Thankfully, Trin's doctors worked miracles and were able to remove 95% of the tumor without paralyzing her. Her surgeon this time around (famed UCSF doctor, Mitchell Berger) was the one who invented the technique that was used to remove the remainder of Trin's tumor without having a severe affect on her left side motor skills. We are eternally grateful for the team of doctors and their amazing work!

Still, Trin will undergo intense rehabilitation in order to regain her balance and motor skills. Part of getting better is practicing simple things like walking. Trin's left leg is numb most of the time so she carries it like dead weight, therefore she unfortunately keeps running into walls and tables etc. But with each day we are witnessing progress in her rehabilitation.

Today, Eddie, Erica, and I took Trinity to the Golden Gate Bridge and Fisherman's Wharf to stretch out her legs and get out of the house. Sunlight and fresh air plus laughter and good company is such great therapy for the soul! We want Trin to get out as much as possible so she doesn't get depressed by being stuck inside. The weather was perfect in the city today and we had a fabulous time bay-watching from the bridge and munching on bread bowls at the pier. We also grabbed some matching hoodies to remember her journey and recovery in SF. Tonight, Warren brought over some yummy Chicago-style pizza and a netflix box - so relaxing and cozy times lie ahead! Enjoy your Tuesday night readers...and remember to be thankful for all you have. <3

Love Love Love,
Nazy

08.17.10: GIVING BACK

Good Morning Folks,

Something special about Trinity's testing brain cancer experience is that it has been inspiring to all of us. I personally have noticed my own eagerness to help others in need even more than before, and to donate to causes that I would have otherwise overlooked in the past.

In this spirit of giving, Trinity was also invited to participate in a UCSF brain tumor study to determine whether new MRI techniques can provide doctors with more info about the cancerous activity in different regions of untreated brain tumors. Trin was asked to partake in the study since she was already undergoing an operation for the removal and biopsy of a brain tumor. These techniques were developed by the genius researchers of UCSF and they're designed to take 3D pictures of the suspected tumor growth beyond what is visible on conventional MRI.

Trinity has asked me to post this blog to spread awareness of this issue. Developments that emerge out of research such as this are what save the lives of our loved ones like Trinity Portrum. So if you or anyone you know might qualify to participate in such a study, please contact Ken Smith at Kenneth.Smith@ucsf.edu or 415-353-4902. Participation in the research is obviously voluntary and takes only an extra hour in the MRI machine. It's an amazing gift to provide for future patients. Thank you!

To all the Researchers and Survivors!
Nazy

08.16.10: RECOVERY DAY #5

Happy Monday peeps!

It seems like Trin's recovery gets better by the day. She has been such an incredibly strong person during the last week since her second surgery. Today we woke up, had bagels and coffee for breakfast, helped Trin get her pills taken and then assisted her in taking her first shower since surgery on Wednesday. The blood has finally been washed away from her scalp and the wounds look much better.

Following our morning affairs...Erica, Trin, and I headed to a market near UCSF and exchanged some coins from a donation can for a cash voucher so we could rent a movie to pass the time. After that, we had dinner at the condo and Warren walked over from his house in Sunset to visit and took the girls to ice cream at Baskin Robins...Trin's one minor request so far during recovery :)

Now, we've made our beds and are cozing up to watch the pixar film "Up." Trin's pain level was at about a 6.5 today but after taking her vicodin medication she says it's now at about 5.5. We got a heating pack at Walgreens today for Trin's neck and that has helped ease some of the discomfort. Her balance has been off due to lack of motor skills on her left side, but we took her on a walk today for practice.

Thanks again for checking in friends. Much love to you all! Good night.

Love,
Nazy

08.15.10: RELEASED FROM UCSF

Trinity underwent her second brain cancer surgery this week on August 11, 2010. The amazing genius of a doctor successfully removed 95% of the fist-sized tumor from Trinity's brain. Dr. Berger of UCSF had to shave a large portion of Trin's head, which we all view as a small price to pay for the life that he saved! Trin remains positive and her head has now been put back together with 45 staples (4+5=9, and 9 is Trin's lucky number! More on that later)...

Trinity has been extremely grateful for all of your emotional and financial support and we continue to keep all of you in our thoughts. Please keep Trinity in your prayers through this testing journey as well. And as Trin says, "TAKE IT AS IT COMES!" God bless!

Love & Faith,
Nazy

08.11.10: BRAIN SURGERY #2

Greetings Friends!

I am writing this blog to keep you updated on Trinity's brain tumor surgeries and how her recovery is going. I figure it's the easiest way for friends and family to follow her progress. At some point, I will write some retroactive blogs that go back to when this all started in February this year when Trinity discovered she had a brain tumor. Until then, keep checking back for updates on the latest developments in Trinity's journey and battle against brain cancer. Thank you!

Love & Faith,
Nazy