Great start to 2010...

After a wonderful holiday we were ready to say goodbye to 2009 and look forward to what 2010 has to bring for all of us...health, happiness, a more positive outlook on life, a very special family wedding and hopefully a medical MIRACLE!

My mom just finished up her 3rd week of chemotherapy and radiation treatment. Because she started in the middle of the holiday season, her first couple weeks of treatment were only 2-4 days instead of the full 5 days. I think this worked out in her favor to allow her body to start out more slowly. She sent me a text this Friday telling me she had just finished her first 5 day treatment week and put a big "WOOHOO" at the end. She said she feels tired by the end of her full week of treatment, but she still had enough energy to kick my butt at the gym today! She is learning ways to relax during her radiation treatment and now refers to it as going on vacation into her "hut." Her first blood counts this week came back perfect and the doctors say that her body appears to be handling the treatments extremely well. My mom specifically asked her doctor how he thought she was doing so far and he said "great"! I'm soooooooo incredibly relieved to see her feeling so good, but also made her promise me that when she's having a bad day, its ok to tell us about it.

The doctor's plan is to continue chemo and radiation for 3 more weeks. She starts a clinical trial on January 18th that I am still currently finding out more about. I will share with you real briefly what we know about the trial. This clinical trial is a type of double blind research study being done on patients with glioblastoma brain tumors. The point of the study is to prove that when you combine chemotherapy with radiation therapy and follow it up with a drug called Avastin, patients have improved tumor control compared with chemo and radiation alone. Avastin is not a NEW cancer fighting drug, it has been used successfully for many other types of cancer treatments but this study is for doctors to see whether this drug will work for glioblastomas. Avastin is an antiangiogenic agent, which means that it can interrupt the body's ability to grow new blood vessels, causing tumors to shrink. There is also information that shows that Avastin may eliminate poorly formed blood vessels in tumors, resulting in improved blood flow. Improved blood flow may result in better delivery of chemotherapy agents too. So all in all it sounds like a very promising study. Unfortunately because it is a double blind study, a certain percentage of patients will be receiving a "placebo" instead of the actual drug. But my mom has a very STRONG feeling that she will be getting the "good juice" so she calls it. And you know, some patients that receive placebos can even have amazing results because they believed all along that whatever they were receiving it was helping them heal. So the way I'm choosing to look at it is either way, my mom has such a positive attitude that no matter what they give her she will benefit from it. And if the doctors are learning something, even one tiny thing, that will help someone else with a glioblastoma down the road, then its all worth it!

And now on a little different note, for those of you that didn't know, my younger sister Taryn got engaged this summer to her long time boyfriend Mac. Recently Taryn and Mac have decided to move up the date of their wedding from late August to May 29th, which happens to be my mom's 55th birthday and keep the celebration small and intimate. The venue they were looking at changing the wedding to just happened to have that date available and the fact that her birthday even falls on a Saturday this year...well it couldn't be more perfect! So we are jumping into the wedding planning to make everything come together for them. Mom is looking forward to dancing all night long at the wedding!

Again I want to say thank you thank you thank you to all the wonderful people who have rearranged their lives to drive my mom to her treatments when my dad and sister are working. I feel like the day that I move back up to Whatcom county just can't come soon enough. My amazing boyfriend has spent every weekend making the 2.5 hour drive up from Lakewood with me so that we can spend time with my family. And as I realized today at the automotive shop, my poor car has taken a beating and I had to buy some much needed new tires. But it eases my mind knowing that my mom has great friends and family to fill in for us when we need it.

So many people continue to ask us what they can do to help?? And honestly right now, as a family we are managing very well, but we promise to ask for help when we need it. The one thing I do want to say is this...Anyone that knows my mom knows that family means EVERYTHING to her. Even when Taryn and I were little, we picked up on all the love and dedication she made to keeping our family close. From time to time every family faces situations that bring up disagreements that could possibly end in some hurt feelings. But its those times that you pull together and should work to put differences aside to get through it as a family. What I'm trying to say is, if anyone reading this blog has some unresolved family issues weighing on their hearts, please take a minute to step back and ask if its really worth growing apart from the people that should matter most in your life-your family! My mom has always said and lived by the advice of "when it comes to family, let the small stuff slide." Now more than ever I realize that we are never guaranteed another day to apologize, make things a little better, or spend another day with the people we love.

My mom continues to be such a positive and bright spirit to be around. Like right now at this very moment she's cooking pasta dinner with Il Divo cranked up in the kitchen, singing away :) She swears that Il Divo is very stimulating to her brain and listens to it all the time, much to my dad's dismay ha ha! One of her very kind and knowledgable doctors told her that people learn to really LIVE with cancer and a lot of people live a much better life with it than they did without it. God Bless and love to you all, more to come soon!

A Very Merry Christmas To All!

First off, I want to take this time to wish everyone a very Merry Christmas from our family to yours. This holiday season we have really taken time to recognize and appreciate our very many blessings. Now more than ever we are holding our friends and family very close to us.

This week was a very momentous one because my mom officially began her first round of cancer treatments. She started chemotherapy and radiation therapy yesterday at the St. Joseph's Cancer Care Center. She starts everyday with a light breakfast and a small cocktail of medications to help ease her through the treatments. Her doctors prescribed a wonderful new antinausea medication that she is on 24/7 to preventively treat nausea, but also has 2 other medications on hand at home for if any breakthrough nausea does occur. She is also on a broad spectrum antibiotic to ward off any bugs she could pick up while her immune system is down from the chemo. I have fully stocked the house with antibacterial wipes, sprays and hand sanitizer everywhere :) For the next 29 days (of a 30 day treatment plan) she will take her chemotherapy pill (Temodar) at home. Following this first round of chemo, we are told she will be on a 5 day dose every couple weeks.

Today I was able to go with her to her radiation appointment and see first hand the amazing care she is getting. Her radiation tech Aaron was very friendly and took my dad and I back to see the TomoTherapy machine and be with my mom while she got ready for treatment. Once they put on her special radiation mask they moved her into the machine and did a couple minutes to scans to make sure the machine was correctly lined to allow the radiation to hit the most specific target on her head. During the actual radiation they showed us on the computer screen the MRI scans of my mom's brain taken today and the areas and levels of dosing for radiation that the doctors had ordered. The actual radiation treatment took only 4 minutes!

The whole process is very noninvasive and was over before I knew it. I did find myself getting a little emotional when it came time to see the mask put on her and see her go into the big machine. But like I have so many other times in my life, I drew strength from my mom. Today and everyday from now I want to be strong for her when she needs reassurance. She felt great afterward and even felt up to a little last minute grocery shopping. We are told that because she so recently started her treatment, she may not be experiencing any side effects until the next couple days.

We are looking forward to having a nice quiet holiday at home with our closest family. We can't tell you how much it means to my mom and our entire family that so many wonderful people have have reached out to us. It really goes to show that the best gift is to let someone know that you love and cherish them and communicate that to them, every chance you get. Merry Christmas and may God bless your family this holiday season as much as He has blessed ours.

"Ready to fight"

Sorry once again for taking so long to give you all an update, but I love being able to pass on PROMISING and EXCITING news…

So lets go back to the end of last week. On Friday my parents travelled down to Seattle to meet with Dr. Chamberlain, Chief of Neuro Oncology at Seattle Cancer Care Alliance. He has been consulting with my mom’s oncologists in Bellingham and is 100% in support of their current plan for her treatment. He is also very excited about the clinical trial in Bellingham that my mom will be participating in and promised us that she will be getting the state of the art treatment at St. Joseph Cancer Center. Dr. Chamberlain will continue to oversee my mom’s care from Seattle and he encouraged her to be treated in Bellingham because there is no reason for her to travel when she can get the very best care right here at home. The one recommendation that Dr. Chamberlain did make was that he would like my mom to begin radiation, chemotherapy and the clinical trial all at the same time and as soon as possible. So beginning this week, she spent almost every day at St. Joseph Cancer Center (SJCC). She was prescribed her first round of chemotherapy and was fitted for a special mask that she will be wearing during her radiation treatments.

Radiation therapy uses various forms of radiation to safely and effectively treat cancer and other diseases. Radiation works by damaging cells, normal cells are able to repair themselves, whereas cancer cells cannot. My mom’s 5 day a week radiation treatment will take place in a special machine called TomoTherapy. It is an 8 foot tall device with a doughnut-like hole in its center and is one of only 120 such machines in the world! It uses 3D images to guide cancer-fighting radiation treatments with such precision it can hit a tumor the size of a pea. It allows the doctors to better target the radiation in my mom’s head to protect healthy cells from damage. Each session will last about 20 minutes and she won’t see or feel a thing. My mom shares my fear of small tight spaces but luckily one of her wonderful oncology nurses is teaching her to use acupressure to help her relax before she goes into the machine. Radiation side effects occur only in the area that is being treated and not everyone has these side effects. If they do occur, it is usually in the second half of the treatment course and could include hair loss, nausea and vomiting, fatigue and mild skin reactions.

The new chemotherapy treatment my mom will be receiving is cutting edge and the VERY BEST! Chemotherapy is a group of medicines that can kill cancer cells directly. My mom will be given a pill form of chemo, which is nice because she can take it in the comfort of her own home. It is considered a systemic therapy because the medicine will go through the bloodstream to the entire body and for this reason patients tend to experience many more side effects than radiation. The newer forms of chemo (like the one my mom will be on) have made some breakthroughs by producing very little side effects in some patients.

We have an INCREDIBLE family doctors office that have been a pillar of support to my mom these last couple weeks. Marcy Hipskind spent an hour talking with my parents and giving them a lot of encouragement, telling them “People live so much longer and so much BETTER with cancer these days!” Little did we know that Marcy was already very much on board! Earlier in the week she had contacted my mom’s surgeon and oncologists and presented my mom’s case to the Tumor Board at St. Josephs Hospital. During the board meeting her radiation doctor described my mom as “a vivacious woman, full of life and ready to fight!” It gives me such comfort and hope to hear that so many knowledgeable doctors are following my mom’s treatment closely and they themselves are getting inspiration from my mom!

We are currently just waiting for the first radiation day at SJCC to be scheduled, then chemotherapy and the clinical trial will begin as well. My parents were told it could be as early as Monday December 21st. My mom is feeling strong, encouraged and very supported by all of our incredible friends and family. She’s even felt up to working out at the gym, which has encouraged me to get my hiney in gear again  God bless you all for being so patient and understanding with my blogging…there has been so much information coming at us so quickly, I really am trying to do my best to keep everyone up to date. I promise to include more about the clinical trial as soon as I myself, can become educated on the process. Thank you for all the heartfelt emails, texts and phone calls I’ve received. One that particularly stood out to me this week was an email (including the picture I posted) from our dear friends Laurie & Bob Winters who currently live all the way over in Boston:

“Attached is a picture of the candle I burn every day in prayer, hope, optimism and love for your Mom. We are lighting a pretty candle, made by women in Honduras in a program that supports them, in your honor Tricia, every day. It shines beautifully for you and carries our prayers and love for your healing and strength.”

Plan of Action

This Friday we spent almost 5 hours with the wonderful people that work at St. Joseph’s Cancer Center in Bellingham. We received a ton of information about the treatment options and the overall process my mom will be facing. Learning that my mom has cancer has brought on a flood of feelings and concerns for the future. The people at St. Joseph’s Cancer Center understand just how overwhelming this can be and are helping us learn as much as possible about what we may experience. Right here in Bellingham they offer the best available technology, techniques and state-of-the-art equipment available to treat cancer. The staff have already been so supportive and uplifting to deal with.

The very good news is that the prognosis that came with my mom’s diagnosis really is much more positive that we had originally hoped for. After meeting with several different oncologists, we chose Michael Taylor (Radiation Oncologist) to monitor and plan my mom’s treatment. She liked his “warm & fuzzy” bedside manner and the fact that he brings in his golden retriever to the office from time to time  Dr. Taylor is very optimistic because her tumor was so small, was removed completely and my mom is in such good health to begin her course of treatment. We have an initial plan to begin her first radiation treatment starting December 10th. Radiation therapy will be 5 days a week and continue for 6 weeks. We also were told that chemotherapy is actually very effective in treating this type of brain cancer. A 4-6 week course of chemotherapy will follow the radiation therapy. Frequent MRI’s will be done throughout the first couple months of treatment, to keep an eye on any tumor regrowth but at this point the doctors don’t expect to see another tumor popping up any time soon. During treatment she also has access to some pretty great alternative therapies including a dietician, massage therapist and acupuncturist.

It is important for you all to know that we are still actively pursuing other opinions and specialists for further treatment options down the road. First of all we have already requested a 2nd reading of the tumor pathology report to be sent to UW. Unfortunately even after triple checking everything, mistakes are still made in medicine and we want to make sure we know for sure exactly what kind of cancer we are dealing with. Also, St. Josephs has already presented to us the option for my mom to participate in an ongoing clinical trial for glioblastomas. We will be asking lots of questions and be doing some extensive research about this trial before making a decision about this course of treatment. But it is so wonderful to know that we have OPTIONS! Even just by word of mouth we are hearing about new treatments that have worked for other brain cancer survivors and we are getting more and more hopeful for a positive outcome.

Here is a personal message from my mom…
“Thank you EVERYONE for all your love, support and healing words. I promise I am thinking about all of you just as much as you have been thinking about me. Please know that all of your phonecalls, emails and blog comments mean the world to me! Just because I haven’t been able to speak with you or see you yet, doesn’t mean that I haven’t been strengthened and uplifted by your thoughts and warm gestures. I’m feeling stronger everyday and my family wants me to preserve my energy for starting my first round of treatment next week. I want to reinforce the POSITIVE outlook we are choosing to have for the future. Love you all!!!”
-Tricia

We hope that by sharing this information with all of you will help you feel more connected to our family and give my mom continued strength on our journey.
Please feel free to email me at Tanisita16@aol.com with any more resources or medical contacts that could be of use to my mom. Feel free to visit the St. Joseph Cancer Center website www.peacehealth.org/cancer. The more we learn the more empowered we become to help my mom fight this battle.

Pray

We are sorry it has taken so long to update the blog, we know you've all been waiting to hear the results from my Mom's biopsy. Unfortunately on Monday my family got some upsetting news that the tumor that they removed during surgery was not what they had originally thought it was. Instead it was a stage 4 malignant glioblastoma multiformes. What does that mean? Well we aren't really sure yet what that means. As a family we are still trying to digest this news and quickly become as educated as possible for the road we are about to travel down. It is very important to my mom that we keep everyone she cares about well informed of what is going on.

The first thing people have been asking is "how is Tricia doing?" To put everyone a little at ease my mom is doing GREAT. She continues to have a smile on her face daily and has a very positive attitude and outlook for the future. Never have I been so amazed and grateful for the ongoing prayers, love and support from our family and friends. Her recovery from surgery is going great and she goes in on December 9th to have her staples removed from her head and start her first course of radiation therapy. As far as we know chemotherapy is not an option for this type of cancer because it cannot cross through the blood brain barrier.

Of course we plan on getting a 2nd, 3rd and 4th opinion down in Seattle for the best course of treatment. We are so lucky to live so close to some of the very best cancer treatment centers in the country. We may have an appointment as early as next Monday with Dr. Mark Chamberlin, Chief of Neuro Oncology at Seattle Cancer Care Alliance. There is also a doctor in Oregon at Oregon Health Science that specializes in his research on this specific type of tumor. The world of medicine is advancing everyday with new breakthroughs in cancer research. We are going to explore EVERY option to make sure my mom has the best care possible.

We know this news is hard to take in and it has been so hard for me to try to find the right words to describe how we are feeling at this time. So many people have been sharing with us miracle stories of people they know that have lived a long time with brain tumors. We do not believe in timelines or odds, personally I believe they were made to be broken and defied. My mom is the picture of good health, already has such a positive attitude and is ready to battle! We are asking everyone to please continue to pray, pray, pray. It gives us great comfort knowing how many people are praying for our family. God bless you all, more to come soon I promise.

She's Home

After a long day of waiting for the doctor, my Mom finally got the ok to go home. She was MORE than ready to leave her room, come home and sleep in her own bed and eat some good food. She will be getting waited on hand and foot and can't wait to catch up on her Tivo shows. The nursing staff were so wonderful at the hospital, they took excellent care of my Mom and spent quite a bit of time visiting with the 4 of us in her room. I think they appreciated having such an easy patient! Her physical therapist told me the whole surgical floor was talking about how quickly she was recovering. It is a huge relief for our family to have her back at home, we are all going to sleep a lot better tonight. God blessed our Mom this week for her surgery and we pray He will continue to watch over her during her recovery and while we wait for the results from her tumor biopsy.

Beauty Queen

My Mom is downright perky this morning! They removed the drain from her head early this morning and she said she feels much more comfortable now that its out. She was up and walking around the hall again this morning with physical therapy and even got to take her first shower. She does get really tired after moving around for short periods of time and then starts having trouble finding her words (totally normal after the surgery she had).

Taryn fixed her up with a very fashionable head scarf because she has been feeling self conscious about her bandage. Her speech is getting better everyday and she's just mixing up a few of her words now and then. She actually sent my sister a text message this morning, which made perfect sense to us :)

There is a little bit of talk from the nurses about sending her home today. Her nurse just came in to remove her IV, which is almost always a good sign that a patient is going home. We are just waiting for her surgeon to make his rounds and give us the final word. When she does get to home we are going to make sure she lays low and gets lots of rest and won't be able to have visitors stopping by the house for at least a week or so. We really want her to have a nice quiet environment to heal up and get her strength back. We would also like to ask that family and friends call either my Dad's, Taryn's or my cell phone instead of our home phone. The blog is also a great place to leave her messages, we've been reading the comments to her daily. Check back soon, we will let everyone know when she's heading home.