Eagles and Ashes

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I have wanted to write a post about my dad for quite some time but was never able to wrap my head around what I wanted to say. For those who did not know my dad, he was a hematologist/oncologist who was deeply loved by his patients. He was a man who dealt in black and white. Never grey. We did not usually see eye to eye on many issues but I never doubted that he loved me and my mom and my siblings.  He was the person who took me fishing and backpacking and camping. He had a vast knowledge of so many things that it sometimes blew my mind what was stored in his head.

Dad loved the outdoors and wildlife. He loved fly fishing and tieing flies.  The last few years of his life were very difficult and he wasn’t able to spend the time doing the things he loved.  When he died in March of 2012, he was cremated with a fly in his pocket. At his funeral we put his ashes in a fishing creel. At the altar was the creel, an American flag (he served as a navy doctor for 11 years) and a tin cup in order to toast the opening day of trout season. During mass I looked out a window and in the distance (hundreds of yards away) was a group of trees. In the trees was a large bird of some kind. I decided that was dad saying all was good. My dad has continued to make visits over the last few years and it is always in the form of a bald eagle.

The next time I needed a visit was on the way to the doctors to get my drain removed after breast cancer surgery. Scott and I were driving to the clinic and an eagle came up from the side of the road and flew right in front of the car.  I was really worried about getting the port removed but felt better after seeing the eagle. I have had several eagle sightings since then. I was thinking a lot about him one day at work and when I walked outside to go home, there was an eagle flying in circles above me. When Scott and I were on our way to Iceland for a vacation, an eagle flew by the ferry we were riding. I have taken that route many, many times over the last 15+ years and have never seen an eagle near the ferry.

Last week, Scott and I took a trip to Montana to drop some of his ashes at Hubbard’s Yellowstone lodge. My dad loved spending time at this lodge and we thought he would like us to leave a bit of him in this beautiful place. On our drive there, I saw an eagle about an hour into our trip. Scott said “Well, there is your dad.”

When we got to the lodge, we walked around and I decided the best place to sprinkle his ashes would be the lake.  The lake is home to a pair of eagles.SLS_3008

Scott rowed me out in the middle and dropped anchor. I started crying before I sprinkled the ashes but I wasn’t crying because I was sad. I was crying because I was glad to have the opportunity to take him to a place he loved. A place he went to  fish and relax and enjoy the outdoors.

I said a few words and sprinkled the ashes. A sense of calm came over me.  SLS_2980

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I had a fishing rod and casted a few times in honor of dad (I am new to fly fishing having just learned at a Casting for Recovery Retreat. I forgot to bring clippers and didn’t have a way to release the fish if I caught one.)

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Scott rowed me back to shore. I borrowed some clippers and spent the next 2.5 hours fishing from the dock.

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While I was fishing, an eagle dove into the lake, not far from where dad’s ashes were dropped and caught a fish. It was a magnificent sight.  I never did catch a fish that day. But the act of casting brought me close to my dad.  I now have a place to go and visit him and fish.  A place he loved.

I look forward to the next eagle sighting. It will be Dad checking in to let me know he is good and everything will be alright.

I am a Lab Rat

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I have done a lot of things in my life but until recently a lab rat has not been included in that list. I guess I really should not call myself a lab rat but more like a lab human. I agreed to to take part in a Phase I clinical trial for a vaccine to delay/prevent the recurrence of breast cancer.  The entire  name is “A Phase l Trial of the Safety and Immunogenicity of a Multiple Antigen Vaccine (STEMVAC) in HER2 Negative Advanced Stage Breast Cancer Patients.” I was the second human to get this particular vaccine.

Over the next 15 months I will visit the Tumor Vaccine Group a the University of Washington 7 times. My first visit was July 14. That day entailed a detailed description of the study and what I should expect for each visit. I met with one of the doctors involved and we spent at least 45 minutes going over the nitty gritty. (I really like her and her last name is Stanton) I then had a physical, chest x-ray, blood pressure and a tetanus vaccine (this is used to measure my overall immune response) and gave 24 vials of blood. Well, actually, it was 22 vials of blood. The tap ran dry at 17.  The nurse then retapped the vein but it ran out after 5. He wasn’t going to stick me again and decided that the study people would just have to “make do” with 22 vials.  My collection of medical tattoos also grew with two new dots on the left arm. I now have a total of 7 “tats.”

The tattoos are markers so that the vaccine is given in the same place every time. I get the vaccine three times over the first three months then a booster at month 6 and month 12.  Each visit includes a physical and blood work with only Month 4, 6, 12, and 15 requiring the 24 vials. At month 2 and 3 only a paltry amount of blood is needed.  Month 4 and 15 also include a skin biopsy of the vaccine site to look for the presence of the vaccine still under the skin.

After doing all the pre work, I got the vaccine. Then I laid in bed for an hour to be sure I didn’t have a reaction to the vaccine. It was a good time to read, take a nap, drink juice or whatever else you do waiting to see if something might or might not happen. Nothing happened so I made an appointment for August and off I went.

While the primary goal of this trial is to delay/prevent the recurrence of breast cancer, the ultimate goal is to develop a vaccine to prevent the occurrence of breast cancer.  I am so fortunate to live in an area with access to excellent health care and medical research. Studies involving the diagnosis of Stage 3 HER-2 neu cancer are few and far between. I feel very lucky to qualify for this one. My hope is that a vaccine is found and women after me never again have to deal with this disease.

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For those of you that want more info on the study, it can be found at https://clinicaltrials.gov/ct2/show/NCT02157051?term=stemvac&rank=1

Two year “cancer free” anniversary

Yesterday (February 20) was my two year “cancer free” anniversary.  Like most life altering events, the time since my diagnosis seems like only yesterday and forever ago.   Three women I  know have been diagnosed with breast cancer in the last year and a half.  I sat and talked with two of them at length.

We talked about the meaning of ER/PR, Her2, triple negative, Sentinel Lymph Nodes, ALND, mastectomy, lumpectomy, and a  myriad of other acronyms and terms that have invaded our vocabularies.

We talked of the feelings of disbelief and fear that invaded our lives, these unwelcome interlopers sneaking into our thoughts at every turn.

We talked about deciding on treatments and the possible side effects of said treatments.

We talked about our families.

We cried.

And we laughed.

Yes, even in the midst of such turmoil, there is laughter.  And beauty. And all the things that were there before diagnosis.  Sometimes you just have to be reminded of them.

Yesterday was my two year “cancer free” anniversary.  Scott and I talked a bit about the events of the last two years.

He made me laugh, describing some events of the day.

We celebrated by eating ice cream.

Yesterday was my two year “cancer free” anniversary.  I took the bus to a doctors appointment. (Since diagnosis, I get “nervous” before any doctors appointment.  My blood pressure goes up.  I have to practice meditative breathing.) For most of the 25 minute ride, a woman sang hymns. The bus was as quiet as a packed bus could be. The tension flowed out of my body. By the time I got to my stop, I was the calmest I have felt going to the doctors in the last two years.

I was lucky to be on that bus, at that time, with that women.

It was beautiful and calming and I saw and felt that beauty.

Yesterday was my two year “cancer free” anniversary.  Next year I will celebrate my three year “cancer free” anniversary. There will be beauty and laughter and I will experience both.

A few photos from the polar bear plunge Jan 1, 2015 – My way to start the new year.  Way out of my comfort zone!

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Hugs – A hug is like a bandage to a hurting wound. ~Author Unknown

My heart is heavy and sad.  My friend Jody has died.  Jody and I met while going through radiation together.  I wrote about her in an earlier blog Hair! and 13 to Go.  After radiation we stayed in touch.   We saw each other last spring.  I saw her again on Oct 13 at SCCA.   Jody had Inflammatory Breast Cancer.  She died on October 30th.  Somehow, I don’t have a picture of her or us.

Jody and I would probably have never met if we didn’t both have breast cancer.  We live about 60 miles apart.  I want to say “well that is one good thing about being diagnosed”  But, there really isn’t any good thing about cancer.  It sucks.  We only try to make good things come from the bad.  And this was one of the good things.

We were able to talk to each other in the way that only those who are going through what you are going through understand.  And… we hugged.  We hugged every time we saw each other in the radiation oncology waiting room.  We hugged again when we passed each other, one of us going in and one of us coming out, near the treatment rooms.   We texted hugs (not the same as a real hug but good in a pinch.)  when we were not near each other.

It is always great to meet a fellow hugger!  We hugged 5 days a week for 7 weeks.  We said so much to each other when we hugged.  We did the “port still in place” hug.  We did the “skin is burned from radiation ” hug.  But we always did the “so glad to see you”  hug.  Every time we hugged it felt ” like a bandage to a hurting wound.”

I am so glad to have met you my friend.  Your children will miss their mom.  Your parents will miss their daughter.  Your husband will miss his wife.  I will miss our conversations.   But most of all  I will so miss those Jody hugs.  Rest in peace my dear friend.  Hugs!

 A hug is the shortest distance between friends.  ~Author Unknown

A hug is two hearts wrapped in arms.  ~Author Unknown

What a difference a year makes!

Today is the one year anniversary of my last chemo!  And boy, what a difference a year makes.  Last year I was with Roberta and Alexa having my last (and 16th) round of chemo. Today I was at work, teaching and training clients.

For those of you who don’t know, I run a program that trains people to climb Mt Rainier.  This past weekend we did an annual training hike to Camp Muir (10,800 elev).  Camp Muir is reached by hiking from Paradise for about 4.5 miles.  There is an elevation gain of 4680 feet. It is strenuous! Due to circumstances beyond my control, this is the first time I have done this hike since summit-ting Mt Rainier in 2010.

So, here are some before and after photos.  It is good for me to be able to see where I was and where I am.  That way when I get impatient with the whole healing process, I can put things into perspective.

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Alexa, me and Roberta on August 5, 2013.

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Me at Camp Muir, August 2, 2014.  I do have hair under that hat!

 

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My clients and me at Camp Muir.

Just a quick update on my health:  I am doing great.  My last blood work was normal.  I still have numb spots and the occasional shooting pains in my feet.  My fingers (particularly my right digits) get numbish and as I call them “not normal”.  I still go to Seattle Cancer Care every other month or so to see doctors or to have mammograms, etc.  I still plan on having renovations done on the “girls,”  just to get them facing the same direction at the same elevation.

Mother’s Day Revisited

Ahhhh- Mother’s Day.  The day of brunches and flowers and picnics.  Homemade cards and coupons for walking the dog and cleaning the kitchen.  Breakfasts of cereal and toast and fruit that can be assembled without the use of the oven.  Pictures made from distorted impressions of paint laden hands.  I am daughter and a mother, I have made and received my share of the above for Mother’s Day.

My mother never really liked Mother’s Day.  She felt that if you couldn’t be nice to her every day, she didn’t want you to be nice to her just one day because someone said you had to.  When I was young, my dad would buy my mom and grandma (she lived with our family) an orchid corsage to wear to church.   While mom appreciated the thought, I am not sure she was that fond of orchid corsages, either.

My mom (Theresa Scala Cantow) was an only child, adopted from a foundling home when she was close to two years old.  The story goes that when she was brought into the room to meet my grandparents, she immediately crawled into my grandfather’s lap.  They adopted her and she was the light of his life.   Mom was sickly as a child and spent a lot of time alone.  She knew she would never have just one child.  So, when she and my dad married, they had five kids.  In seven years.  With my dad gone a good portion of the time (medical school, internship, fellowship, ship’s doctor,et.), my mom was, in essence, a single mom, with five kids age 7 and under.

All five of us (four girls and a boy) learned a lot from my mom.  We learned that family was more important than friends and woe be to the sibling that was mean or unkind to another sibling.  My mom always said she was never “mother of the year”  because she didn’t like to bake or do crafts and she sometimes yelled and got mad at us and wasn’t always patient.  But my mom took all five of us places.  All the time.  We learned to love to go places: the beach, historical sites, museums, the mall, anywhere at anytime.  We learned how to take care of each other.  We learned to stand by and up for each other.

My mom leaves an amazing legacy.  You just have to look at the last few years to see what she (and my dad) instilled in their children.  In the two years leading up to my dad’s death (March, 2012) my sisters and brother took excellent care of my dad during his many hospital/rehab stays.   When my dad died, there was no (and I mean not one) squabble over who got what and who deserved more.  Later that year, in September, all my siblings came from the east coast for my son’s wedding .  Then in Feb 2013, when I was diagnosed with cancer, my siblings came to stay with me.

They came for a week.  They came for 3 weeks.  They came because we are family and that is what family does for each other.  We support and care for and get mad at and love each other.  They came because we are all raised from the same mom who taught us that family is so very important.  They stood by and up for me.  My mom was present in each sibling during each visit.

Once, I was training for a marathon while visiting my parents in Virginia.  I did my training in their neighborhood.  At one point I needed to go to the bathroom or get water or something.   As I got to the house, my mom was standing at the front door, holding it open, waiting for me to come and get what I needed.  I have that vision in my head.  My mom, open door and open arms, waiting for me.

Soooo,  Happy Mother’s Day to you, mom!   You would be so proud and pleased to know that your children honor you and your memory everyday.  With open doors and open arms we love and care for each other and in doing so, pass the legacy on to our children, who will pass it on to their children.  And on and on and on…….. Everyday.

 

Ringing the Bell

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In March of 2013 I was hospitalized on the 7th floor of the University of Washington hospital. I will spare you a repeat of the details as there are several posts outlining my stay if you care to read about them (Where’s Loretta and Another night in Paradise.)  I did spend some time walking the halls as I only needed to be in my room for antibiotic infusions.  During one of my sorties, I found a bell that is behind the main desk.  It was donated John Charles and Gwedolyn Sowray to be rung when one is finished cancer treatments.  I thought about ringing that bell from the first time I read the plaque until yesterday, when I actually did ring that bell.

I had a doctor’s appointment (shocking, I  know) at UW so thought I would take a side trip to the 7th floor.  I felt a bit weird going and asking to ring the bell but the staff were thrilled.  They said they love when former patients come back and ring.  They also said that not many do come back.  I was asked if I wanted to ring it by myself or have some staff present.  I opted for staff.  The front desk person called around and soon there was a small but very enthusiastic group to celebrate the ring.  I asked if the bell was really loud and was told to just ring it as hard as I wanted.  So I did.  It was loud.  Loud in that deep, resonance that vibrates into your inner soul.  I rang it three times.

When I got home, I did a bit of research to see how and when the ringing of a bell to signify the end of cancer treatment started.    What I found was this poem written by Navy Rear Admiral Irve Le Moyne.

Ringing out

Ring this bell

Three times well

Its toll to clearly say,

My treatment’s done

This course is run

And I am on my way!

Admiral Le Moyne had head and neck cancer and was treated at MD Anderson Cancer Center. In 1996 he had a bell installed outside the main campus Radiation Treatment Center.  Ringing the bell three times symbolizes the restoration of balance, harmony and life energy.  So here’s to a life that has balance, harmony and lots of energy!

 

Happy Anniversary and Thank you

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It was one year ago today that I had margin and node surgery.  That day did not turn out as expected.  But it is the day that I consider my “cancer free” anniversary day.  So, happy anniversary to me.  (I wonder if there is a Hallmark card for this occasion?) I decided to go back and reread the posts from that day. Reading those posts reminded me of something I did every time we moved since being married.  The last time I would be in our home, I would go from room to room.  In each room I would bring a memory to mind of events that happened in that room.  I would then say good bye and move on.  It was a way to bring closure to that part of my life, in that particular place and time.  It helped me make the transition to the next phase of my life. Rereading the posts that Scott wrote one year ago feels a bit like the same thing.  As I read the posts, I remembered what I could (being under anesthesia that day made some of it a bit spotty) and processed what happened that day.  It is helping me make the transition to the next phase of my life.

Speaking of the next phase, I would not be where I am today without an outstanding group of physicians who have cared for me over the last year.   I have written posts about my nurses and radiation techs but not one about the doctors.   So,  thank you, from the bottom of my heart, to the following doctors who give so much of themselves to so many people.

V. K. Gadi, Sara Javid and Chrsitine Fang – my team at SCCA

Dan Downey – Downey Plastic Surgery

Jillian Worth and Sundance Rogers – Virginia Mason Clinic Bainbridge Island

Bill Harris – UW Hospital Attending Oncologist

And to Sarah Rice and Robin Houck, for your time and advice during those first scarweeks, for listening to my craziness and calming my frayed nerves and for making that call to V.K.  Thank you, thank you , thank you.

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One year post diagnosis

It was one year ago tomorrow that I was diagnosed with breast cancer.  It is not an anniversary I will celebrate.  (I will wait until Feb 20 to celebrate one year of being cancer free.)  Tomorrow I will have a “normal” day.  My new normal.  I will go to work.  I will get a haircut (more like a hair fix as there is not a load to cut)  I will go to physical therapy (dealing with some lymphedema issues where I was radiated).  I will take Twix for a walk.   I will cook dinner for Scott.  I will take Vitamin B12, E, D, evening primrose oil, turmeric, Osteobalance, oral lamisil, anastrozole , peppermint green tea and CALM (to keep the cancer from coming back and to combat the side effects of the drugs to keep cancer from coming back).  I will check in on new friends and old.  I will text Fiona and talk to David.  I will live my life.

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Happy New Year!

Wow!  What can I say about 2013 that you don’t already know?  It was a year that I don’t care to ever see again.   2013 stretched my emotional, mental and physical being to points never before experienced.  As I reflect on these past months, I realize that I can be stretched further and longer than I ever imagined.

When I teach stretching exercises, I always instruct my students to find an anchor point from which to stretch.  I had many anchor points this past year.  They kept me grounded.  Without them I would still feel as if I were in that snow globe, swirling in circles, not knowing up from down.

There are so many people I have to thank for being anchors.  I thank the trainers and instructors at Island Fitness who took such good care of my clients and taught so many of my classes over the last months.  I thank all my friends who cooked meals, sent me amazing gifts and cards, listened when I needed an ear, walked Twix, helped me move (In a skirt and heels no less), and went with me to chemo and radiation:  Roberta, Michael, Alexa, Jeanne, Eileen, Diane, Cindy, Tim, Veronica, Buffy, Rosemary, Jim, Tina, Robin, Sarah, Scott, Susan, Sandi, Pam, Vicki, George, Susan, Jerry, Lynn, Daphne, Bill, Tanya, Cheryl, Brenda, Cristy, Trude, Amy, Dee, Mary Lynn, Cheryl, Ruth, Janie, Bob, Nancy, Nanette, Cynthia, Maddie, Nicki, Sue, Julie, Nancy, Wendy, Janet, Dick  and anyone else I may have missed, I thank you.

My family has been amazing!  Jan, my mother in law, made sure our house was clean, provided surprises inside cards for incidentals and always checked in to see how I was doing and if we needed anything.  My siblings, Christine, Claire, Diana and Edward visited from the East Coast and took great care of me while they were here.  When they couldn’t be here, they called and texted on a regular basis.  My Aunt Mary sent cards and called at least once a month.  Fiona went with me to appointments, sat with Scott during one of my surgeries and called to check in to see how things were going.  Rachel watched and walked Twix, went to radiation with me and helped whenever we asked.  David made sure I got to the hospital safely when I got sick, took me to chemo and radiation, and called and stopped by on a regular basis.

Scott has been my biggest anchor.  He has been to all my doctor’s appointments, surgeries, and procedures.  He went with me to chemo and radiation.  He changed bandages and stripped drains.  He hugs me, holds my hand and makes me laugh.

Yes, this has been a trying year.  But I am so thankful for all the anchors in my life.   The great thing about anchors is that you can reel them in, put them in the boat and take them with you. These anchors will travel with me for the rest of my life.

Wishing you all a happy and healthy 2014!

A few pictures of our renovations and a piece of art Rachel made for us.  The street names are all the places that Scott and I have lived.  Main Street is the address of James Madison University where we met.  Pratt and Hill streets are in Baltimore, Maryland.  Riptide Square is in Sterling, Virginia.  Blue Wave Court and Harbor Square Loop are on Bainbridge Island, Washington.

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