Day four of radiation

Laura goes to Portland today with her friend Taeryn.  She feels nauseous and exhausted but doing ok.  I am taking a couple hours off of work this morning and we had breakfast in bed and watched the much needed rain out our window.  I am looking forward to July and August off!!!  Nothing much to report but she is doing ok.  

Our mealtrain started last night.  Friends are cooking us dinners on Mondays and Thursdays for the next month and a half. One of the perks of cancer!

Day two of radiation

Today Laura's friend Ami took her to radiation. I got off work a bit early and met john and Rachel at our house who made use a chicken dinner and vacuumed and washed woodwork and such so Laura came home to a clean home and dinner.

Laura was feeling nasuous and head achey and tired when she got home but took pls for her belly and are a little   The rest of us loved dinner.  

Amazing blood red sunset tonight.  Laura might not feel great but she has a great attitude of let's get this radiation thing done and move on!!!  

I am feeling more confident that this will really help and keep Lu alive a lot longer.  Here are pics of Laura's new close line and the sunset. 

Whole brain radiation

We just met with the radiological oncologist.  Unfortunately Laura is not a candidate for gamma knife radiation.  Her tumors are more diffuse and there is not a solid border between the tumor and the brain so he cannot zap a specific spot.  Dr Kee said he counted 18 tumors from 1.1 cm in size down to a couple millimeters in size.  The one good thing about whole brain radiation is that it will zap the tumors that are just at the single cell stage.  

So currently, they are making a face mask that she will rest in during the whole brain radiation.  She will have ten consecutive days of radiation with the weekends off.  This will take place in Portland.  Whole brain radiation is just what it sounds like; they will radiate her entire brain.  Fatigue is the first side effect.  Hair loss occurred and 2/3 of people their hair grows back but a significant amount the hair loss is pertinent. 90% of people who have whole brain radiation come out with decreased cognitive functions.  This can be anything from balance issues to not remembering things.  The dr said that most people's personality does not change but basically she will not be the sharpest knife in the drawer were his exact words. From my perspective she will just have to learn what life is like with my intellect. 

Why?  Basically brain tumors left alone are life threatening.  Having whole brain radiation will prolong her life.  She will not start her new chemotherapy until a week after her radiation finishes.

More stats: 40% of people with whole brain radiation have a recurrence of brain mets or tumors within one year.  70 to 80% of people with whole brain radiation have their tumors shrink significantly and some tumors disappear.  The dr is hoping to have most of the tumors shrink and some disappear.  Then starting chemo the hope is that the chemo will not let the the remaining tumors grow.  

Again with Laura being young vital and very smart the dr feels very good about this treatment.  Laura will have another brain MRI 3 months after radiation has finished.  

More as we know it. 

More cancer

On June 9th, we learned that Laura’s breast cancer has moved into her brain.  I will try to tell you what we currently know:

First a little back story.  Laura has had a hard time and even stopped doing flip turns swimming a month or so ago because she felt odd and could not do them.  Laura has complained to me that when she turns her head quickly she feels like her eyes do not track like they used to.  She even forgot someone’s name this week which is unheard of.  Every three months she gets CT scans of her body to see if there is any change in the cancer.  She asked Dr. Raish if he would authorize a brain MRI since it has been a year since her last one and he agreed.  Luckily, the CT scans show no evidence of cancer in her lungs, liver and lymph nodes.  Unfortunately, there is cancer in her brain.  Dr. Raish said that around 20-30% of people with metastatic HER2+ breast cancer get brain METS.

She has 17 tumors in her brain.  Eleven or twelve are in the cerebellum and the rest are “above” the cerebellum.  Some are up to 1 cm in size and the rest are smaller but I do not know the resolution or the smallest size that a brain MRI can detect.  We will go to Portland next Monday, June 15th to see a radiologist to see if Laura is a candidate for the Gamma knife which is very targeted radiation on her specific spots of tumors in her brain.  In Gamma Knife radiosurgery, specialized equipment focuses close to 200 tiny beams of radiation on a tumor or other target. Although each beam has very little effect on the brain tissue it passes through, a strong dose of radiation is delivered to the site where all the beams meet. 

She will start a new form of drugs that get into the central nervous system and brain.  All will be pills.  She will have a chemo pill, anti estrogen pill and a breast cancer specific biological pill.   Capecitabine (brand name Xeloda) is the chemo pill she will be taking daily.  Two weeks on one week off.  General chemo side effects along with more hand and foot cracking, peeling and issues.  Lapatinib is the biologic drug that attacks breast cancer cells.  While the two biologic drugs she has been on (herceptin and perjeta) works by binding itself to the outside of the cancer cells and disrupting them, this new biologic drug goes inside the breast cancer cells to disrupt them so its the same outcome but a different process.  Letrozole lowers the amount of estrogen made by the body. This may stop the growth of cancer cells that need estrogen to grow which Laura’s tumors do. Letrozole is a type of aromatase inhibitor. It is also called Femara.  

Hopefully all the insurance authorizations will go through so Laura can start taking all these new pill on Friday or Monday.  As we learn more, I will update this blog.

One year

For those who don't read Facebook this is what I posted yeasterday:

Today is the one year anniversary of finding out Laura has metastatic breast cancer.  With cancer throughout her lungs, liver and lymph nodes, I did not think I would be celebrating this day, but she is not only alive but well.  Thank you big pharma!!!  Her diagnosis was a week before Ani graduated from AHS and two weeks before Laura graduated from CCC with her Medical Assisting degree.  As of a few months ago, there was still no evidence of disease in her last scans. (Next scan results June 9 but whose counting)  The chemo and now two biologic drugs which bind to her type of HER 2 positive breast cancer seem to be keeping it at bay right now.

Like every school year, this past one has flown by.  I can’t believe it’s June next Monday, but at the same time I cannot remember life before my wife had cancer.  I do not think of the future besides my kids and students.  I try to cherish each day but find myself falling back into routines where I spend too much time outside gardening and such and not enough time with Laura.  I think we are doing well as a couple.  We talk. We walk the dogs and actually go on mini dates together- like driving to a track meet or going to Portland together to pick up Ani from the airport.

But cancer is always right there; lurking and stealing my thoughts of retiring and driving the country with Laura in a converted toyota van visiting our kids and walking the dogs on different beaches. (Or more accurately, figuring out what city to get an appartment in and give Laura some city life that she has given up for the country life in Clatsop County.)  It takes the wind out of you.  At times, I am mad and frustrated and maybe swear too much.  I will work on the swearing.  At times I’m too upbeat and positive and Pollyanna.  I’ll always remember a year ago today when Dr. Raish came into the room and said the good news is that there are no mets or cancer in your bones, and I turned to Laura and said, ”See, it’s OK!” but then Dr. Raish said he was not finished…

I have bought cemetery plots.  So strange.  A lot of times, I feel shaky and am not sure why.  I feel like Laura is living on borrowed time and want to make the most out of it.  The reality is we really don’t know.  While the infusions she gets every three weeks- which cost over $30,000 each time (thank you Moda Insurance Plan- I will never complain about my copay again)- we just don’t know how long they will continue to work or conversely what new wonder drug is in the works.  I am starting, just starting, to understand how to live with uncertainty of the the future.  While we all know we will die, not many have an idea like Laura of how. I’m not sure what I want to say here, today, but to celebrate Laura being alive and to promise myself and family that I will be as present as I can and continue to enjoy each moment.  The little things really do matter.  I love our family, our house, our community, and our friends.  Thank you for everyone being there for us.  Even in the face of stupid cancer, I find that more than not, all I can do is smile smile smile.

Spring

As you know it has again been a long time between posts.  Laura continues to do well; Ani is thriving at Occidental and Tim keeps going at Astoria high school!  It's track season so Tim is running the longer track races.  He just got a personal best and broke the 5 minute mark on the 1500 m race last Saturday.  He ran it in 4:50!

Mom and Dad were out from maine for a week.  We ate well and went on some nice dog walks!  Here are some pics:

March 1

Well it's been forever since I posted on my blog.  First and foremost, today is Tim's birthday! He's 17 years old. I find it hard to believe that I have a 17-year-old and a 19-year-old. We will have pancakes and strawberries and whipped cream for breakfast and then go out to dinner somewhere and watch the movie whiplash here at home tonight. Should be a good day.

Laura is doing well. She starts a new job on Monday. She should be working about 16 hours a week as a medical assistant at Columbia memorial hospital. She will be generally working full days on Wednesdays and Thursdays so wish her luck in getting up in the morning and packing a lunch. She can keep her disability payments for at least nine months as work try elk (I am using voice recognition to dictate this and making changes as I read it over but this mistake is too good to change!!  Also you will notice my phone is a better speller than I am!!!) and then she'll either take on more hours or ensure that she has the right number of hours to both work and keep her disability payments. March 17 is the next set of scan results so we are patiently waiting to find out the results there.

For Hanukkah Laura's brother Richard gave her a trip to Europe both her parents and my parents also chipped in so as long as the scans are clean Laura will be booking a airplane tickets to England and France for the summer. It's been so fun thinking about where we want to go and planning out a vacation.

As usual I am doing just fine. The weather has been mild enough to do some gardening and I've just come back from a ski weekend in Sun Valley with my cousin Tim and my friend Pete from the East Coast. Well there wasn't any new snow there was enough snow and we had a blast. Here are a couple photos of life in the Northwest.

Kale that has over wintered that we are eating and is so good!