November Update

Well, where, where has the time gone?  I've written plenty in my journal but feel like I need to finish out important thoughts here.  My energy is so low it may take a while, but there you go.  My best  opportunity is to get an hour or two done in the morning, after that I'm pretty lazy on the sofa.

To back track a few months,  I guess...My 6th round of Chemo was in July, I was going to take August and peach season off, then start doing just 2 rounds at a time, then have another month or so off.  Dr. Lee thought that might buy me 3-4 years.   Took the first month off and the CA-19-9 number began to raise steeply--like from a low of 525 to 1900 in a month.  By the time we started chemo a week later it was at 3200, and it never slowed down after that.  Hardly caused a blip in the screen.  It was the hardest, most deadly chemo yet, throwing up, totally miserable for a week, enough to decide it wasn't ever necessary again.   I did another blood test a month later and we had gone from 4547 to 9000 in one month.  I don't know where we are now, but that was a month ago.  I had another PET scan and that also was off the charts.  

I was having trouble with my heart too, it was slowing down to about 36-38 BPM, really weird, but the Dr. said it wasn't un-normal.  Well, yes it was!  I finally discovered if I quit taking my vitamins from the Block Center in Illinois that the heart issues cleared up--I've cut some out, cut some way back and I'm under control heart-wise at least.

I decided to go on Hospice about a month ago.  There was nothing more chemo could do for me and Hospice would visit at least every week, give me all my meds and know how to answer my questions and help me be at peace.  They have been wonderful, it was a good decision.  So I'm here surrounded by carloads of flowers and notes, kind thoughts and protective children.  It has been totally amazing.  I'm not really in any pain, I cough alot, but have good meds for that.  Learning how to use them in proper combination has been tricky, what will make me jittery, what makes me sleepy, what is constipating  I've been able to keep my weight up pretty well, that seems important.  I am usually tired, sleep on the sofa alot, if there's something I want to do, like go for a ride or especially to the temple, I have to save up for it and be smart--something I'm still learning.

Lori came down two weeks ago and has really taken over running the house.  I can't really get to laundry, cooking, dishes, shopping--nothing normal, someone else has to help me with everything.  I wanted to take Liza on a little outing and Teresa had to help me do everything.  We went to visit teach Ronda who always has fun decorations, I knew Liza would like to see that, then to the dollar store to get a couple quick little things for our Thanksgiving trip to the "castle house" at the coast.  Teresa helped Liza the whole time, I just hung on to the cart and called it good.

Margaret (Bert's wife, my sister-in-law and dear friend) came to visit us for a couple days--so hard for her to get away from her family, so many special needs, but such a treat for Lori and I to have her here.  We met at the temple and did iniatories together, then have rested, rubbed my feet and visited and gone to bed early--but it's a good schedule for all of us.

Claire and Duane just told me other wonderful friends would like to come visit--my dear friend DarLynn Lee from our Kent days, DeFord and Charlene, and Melinda Kimlinger from Missouri.  Oh I'll just have to see how much time I have left!

A visit from our Washington Family

 Trevor's family came for a quick weekend last month, they live in Auburn, WA so we don't get together as often as we'd like. It was a beautiful weekend, tho, and I remembered to take pictures!



Playing my favorite game, Racko.

Playing Cameron's favorite game--WATER

Caisa lets me do her hair, this is one we call "over the top".

Swinging (this picture rotated for no good reason...)

(...and so did this one) That red hair is a show stopper!  Add that to her friendly, fearless personality and she's so fun to take places!

Helping Grammy make breakfast



 

 

A walk by the River on a May afternoon...

We are so blessed to live close to Brett and Jen's family.  We took them for an afternoon walk down by the river.  They're interested in everything, bugs, sticks, rocks, trees, birds...Here are some cute pictures from that day.

And then there was the day we planted our blueberries--everyone helped!  Farfar, Aunt Lori, Jen & Brett and the kids, even the missionaries helped.  We spent so much on blueberries last year we decided we'd plant our own little plot.  Claire had better be around next year when they get going, or we'll never keep them picked!  Last year they took home a freezer full of blueberries, literally!

 

And the girls even planted the baby--"Steven likes it!"

Bottoms up!

They take their work seriously!
 

 

And so they all got planted and this morning we made blueberry pancakes.  If we can keep the birds away we'll be in hog heaven!

Life Over Cancer

Last month Duane and I took two weeks and drove through Utah to Arizona for a reunion with my Dad and siblings.  First we visited with our dear friends who have moved to Utah--we got to see Susan and David Williams, then Janell and Rod Watson with Chalyn and Apryl. On our way home we visited with Jill and Jerry Divis who moved away from us to Arizona--we miss these friends so much, it was such a wonderful reunion with them!

Then we drove on to Sedona, Arizona--a beautiful little resort town with lots of hiking trails through gorgeous red rock formations.  We celebrated Bert's 50th Birthday (a few months late), did some shopping and talked, talked, talked.  So relaxing and nice to be with your family.  We visited a place called Montezuma's Castle--an old Native American cliff dwelling, used from about 1200-1500 or so. 
 

After Sedona, we all drove up to Williams to take the train to the Grand Canyon!  We stayed overnight there, so beautiful.  We got in a couple nice hikes, including we four sisters hiking down into the canyon on the Bright Angel trail--we figure we went about a mile down and definitely a mile back up!  Scott and Marni joined us for that trip--so fun.  Bert and Scott went several miles down the Bright Angel trail.  Brought back memories for Duane who years ago hiked with his brothers rim to rim to rim.  I was so grateful to feel so good and be able to keep up on the hikes.



My sisters Ann & Lisa

  



This is my sister, Lori, being brave wearing a hat!

While we were in Sedona I met a store clerk who had survived 3 rounds of chemo over the last 30 years or so.  She was friendly and so helpful and encouraging.  She gave me the courage to decide to wear head scarves, hats and beautiful earrings instead of relying on my wig. 

She also introduced me to the book "Life Over Cancer".  This book may have life changing impact!  I bought it as a Kindle book so I could read it on the way home, it was so good, I went back and bought it as a real book that I can underline and turn pages--and refer back over and over.  I should probably make a whole 'nother blog about it!

 

The author, Dr Keith Block, outlines what he calls an "integrative approach" to cancer--using chemo, radiation & surgery, but also, as important as those, are a person's diet, exercise, specific supplements and mind/body care.  He outlines more perfectly the exact diet I had decided on months ago--that was so hard for me to figure out, it is so good to see that the leading expert in this type of care agrees with me!  Everything I read in this book rings true and good--I've studied cancer alot and this is the hands-down best resource I've found anywhere.

 

I've just finished my 4th round of chemo.  They are pretty strong drugs but I'm handling it okay.  Originally Dr. Lee suggested we do 4 rounds, then see where we are.  I saw her this week and she suggested we continue, maybe 4 more rounds.  It appears to be working and I haven't had to make any visits to the Emergency room, so hey, let's keep going.  Not really what I wanted to hear.  All my blood numbers are going down--red and white blood cells and platelets are what they really watch--they're still good enough to do more chemo, but makes me susceptable to everything--it's wiping out my immune system, I wonder if there aren't alternatives.

 

I decided to call Dr. Block's clinic and see if it might be possible to get an appointment before Christmas.  I was so surprised to be able to make an appointment for May 8--only 2 weeks away!  And I'll be able to actually meet with Dr. Block himself, as well as an oncologist, a dietician, a physical therapist and have extensive blood work done.  His clinic is only 35 minutes from Jeff and Missy in Chicago.  I've got my flights arranged and I'm going!

 

I have to send all my records--it's a binder full by now--and fill out a 16 page questionaire.  What I really like is how he will individualize a plan for me--I won't just be a statistic like I am now.  In his book he says at the end, "If you were my patient, I would sit down beside you and together we would explore how you can sustain your hope...  Our center would help you devise an action plan that combined tumor-killing approaches with self-care strategies to regenerate your anti-cancer defenses.  I would bring you into a community of helpers and healers who would optimize your health and guide and support you throughout your ordeal.  And I would encourage you to develop a team of your own, to help you make the experience one of healing and connectedness...It is my hope and prayer that this book and the program...will motivate and equip you to make important steps toward healing, and bring you to a full and complete recovery."

 

Throughout the book he mentions herbs, vitamins and supplements that I have already been using with Ray, my naturopath, who I have alot of faith in.  Dr. Block uses them specifically designed to what my blood work shows--that really appeals to me.  And maybe I need all three of these chemo drugs, and maybe I don't--it's such a shotgun approach.  I am certain that what you eat matters, yet I have been told by more than one doctor and dietician that it doesn't.  I don't believe you can cure cancer with your diet alone, not at all, but I am sure that diet contributes to what Dr. Block calls the "healing terrain" of your body.

 

  Well, I could go on and on!  I'm grateful for that "chance" meeting with the clerk in Arizona.  I know Heavenly Father orchestrates things like that!  I'm so excited to have this appointment and see what I can learn.

Some new ideas on Family History

I have always loved genealogy.  In 1973 Dad gave me some family stories he and his Uncle Sigge had worked on, with names, dates, places and interesting tidbits about my direct line ancestors.  I took them with me to Ricks College, enrolled in Genealogy 101, then was able to take a Swedish Genealogy class and join the college genealogy club and soon I was president of this small club.  We took a couple trips to the Salt Lake Genealogy Library each year where I remember arriving as soon as it opened, eating "Suzi Q" cupcakes out of the vending machine in the basement for lunch, and them kicking us out at closing time.  I learned to read the records and ever since have loved doing research for my Swedish ancestors.

Now my dream has come true--Jeff and Missy have developed a similar love for and an ability with genealogy.  They are teaching me things now!  One of the things I'm learning is to add photos and stories in FamilySearch.org.  My Dad is also excited about this--he has written many stories about his grandparents and parents, now he is adding these to Family Search.  He is the only person on the planet who can identify some of the people in pictures and who knows these stories.

Uncle Sigge

HIlda Maria Hedman

Earlier this week he was translating a letter Uncle Sigge had written decades earlier.  As he translated, Jeff typed, and when he finished we had two marvelous stories--Sigge's memories of each of his parents.  They will soon be on FamilySearch.  As Dad was translating I was falling in love with his grandparents, Sven August Laas and Hilda Maria Hedman.  They lived in such difficult times, worked 13 hour days and walked an hour to work each way, 6 days a week.  But through it all they were such delightful people!  Hilda had a wonderful sense of humor, Sigge recounted and I remember Dad telling the story of how once she used salt instead of sugar (by accident) in her cinnamon rolls.  She went ahead and frosted them and offered them to everyone who stopped by that week.  Dad said she'd tuck her hands under her apron bib, kind of rock back on her heels and just wait for the reaction, then she'd giggle and enjoy the joke!  Even to the end of her life Sigge said she had a "shining disposition" a cheerful spirit, even she would cheer up the tired nurses on night shift at her rest home.


1928 Mother's Day picture, Hilda is 4th from Left

Sven August Laas, husband of
Hilda Maria Hedman

 I have such a strong feeling of love for her.  I'm sure we were best friends in the pre-existence, I'm sure when I cross that veil she will be one of the first to run to greet me.  We'll be so happy to be reunited--and reunited as an eternal family. 

This is the picture of Edith Georgina that
so grabbed me

I remember seeing this picture of Dad's farmor, Edith Georgina Svensson (Hilda is his mormor) the picture grabbed me and wouldn't let me go.  I knew a little of her story, placed in an orphanage as an infant, then bid out to the lowest bidder--who would the state be able to pay the least to for her care.  A hard family took her, she never got to go to school because that would cut into the time she could be working for them.  She was in several foster homes in her younger years.  Her husband died as a young man, she was left with 5 young children to care for.  She came to America when my dad was born, see below for a great 4 generation picture.  Anyway, she's another person I know I have known and loved before.

This is 4 generations, my dad is the baby

Genealogy is so much more than names and dates and even more than temple work.  It is connecting families, fitting us into a bigger and bigger group of people we already have loved and known before.  Every story and every picture needs to be told and shared! 

 

The Most Important Thoughts as I go to my first Chemo appointment today

Later this morning I will have my first appointment for Chemotherapy.  I'll be getting three drugs, Irinotecan, Oxaliplatin and Fluorouracil.  Yesterday we met the nurses and saw the facility, learned about the drugs and were able to ask our questions. 

I have thought of chemo as the enemy in the past, now I have to change my thinking and see it as one of our tools in combating this cancer.  I try to envision it shrinking and killing the cancer cells, while I envision the Haelan I'm taking protecting and guarding the good cells that the chemo usually also kills.

It's kind of like going into labor--everybody has a different experience, it isn't pleasant for anyone, but the result of new life is always worth it.  You don't know ahead what your experience will be like, you just go trusting you will get through it and be better off in the end.

I have been amazed and overwhelmed at the caring of my family and friends.  Duane has been with me every step of the way, never fussing once at how expensive this is.  Everywhere I go people mention they are praying for us.  I have received notes that have given courage and comfort, texts and calls and emails to let me know people are thinking of me, people come to walk with me, clean my house, bring me dinner, help me fill my freezer with my special recipe muffins, pumpkin bread and soup.  My sister sent a "chemo care package" with books, puzzles and games.  A friend gave me a gift certificate for a massage!  I've received my first hat, flowers, really nice water bottles, books, ideas, visits, even asparagus!  My sister is paying for my daughter's flight out to visit, her in-laws are spending a week with her childen so she can come.  My two student sons are both spending their spring breaks with us.  The nurse asked if I have a support team, I'd say that's a very big YES!

I'm especially grateful to continue to feel the peace Heavenly Father sends.  There are trying moments, but they are just moments.  99% of the time I'm happy and at peace.  I know I'm in God's hands, there are too many prayers in my behalf for this to not go as He has planned.  Everyone experiences adversity, it's what we're on this planet for, to be tried and tested, to learn and grow.  There has to be a little adversity for us to learn from and show our true colors.  I'm good with that!

The Most Important Things about Doctors

With two sons in medical school and lots of experience recently with doctors, I think it's appropriate for me to give some advice--I'm always full of good advice, don't you know!  My boys will develop their own styles as they go along, these ideas are things I have appreciated and learned from my doctors.

My doctors have been amazing at keeping in touch and following up.  I appreciate that so much.  You don't really know if you should mention a little concern, you don't want to bother someone you know is really busy, so when they call me, I feel they really want to know.  Then I can be more at peace about a little symptom or something.  One doctor has even come to my house a couple times, and I know he has done that with others as well.  I don't know how he has the time, but he makes it.

I also appreciate a doctor who will take his time at an office visit to answer questions, do a little teaching, and really hear my concerns.  I've been spoiled with doctors like this and am so impressed. 

When doctors have made a mistake with me they have been honest and apologetic, that has been so amazing.  I know things happen and appreciate it when they are open about what's going on.

I like to call them Dr. ______.  One person said to call her Dr. Nancy--that just felt weird.  Dr. Chow always calls me Karin and I always call him Dr. Chow.  I like that.

I think these things are as important as their level of competency--it inspires confidence.  I like to know I'm not the first person they've done this procedure on--competency counts of course.

Well, there's my two cents.  I count excellent doctors as one of the great blessings of this whole experience.