Dear Cancer....

photo found on a facebook page of a little boy, Jonathan, fighting liver cancer, also stage 4

 Friends and Family.... my tests and labs are all fine! Just waiting for the tumour marker results. The PET scan looked good. The one area of concern is some fluid on my right lung. It was there last time ( 6 mo.ago) and has increased slightly. Dr. A says there is not enough to do a biopsy. He said it could be from all the damage from the radiation and there is nothing else surrounding the area to indicate cancer, but we have to watch it.. I will have a chest x-ray in 3 months to check it again.

The day of testing went better than it ever has. I felt calm, did not have any problems with migraine's or even a headache! Much, much better!

Dr. A continue's to remind me that my situation is not ordinary, or as he put's it "your just weird"!  I think he encourages me with how well I have done so far without letting me forget the reality of this disease at this stage.He mentioned a new chemo that will be out soon that is showing promising results for people who are HER2+. He said, "I hope we don't have to have that discussion but it is another tool in our back pocket".

I mentioned that it has now been 5 years since the Stage 4 diagnosis...he gave me a hug and said "I love you guys"!

 Thank you Lord...thank you prayer warriors, friends and family :)

Facing Friday

Six more month's have come and gone and it is that time again for labs, testing and my semi annual meeting with my oncologist.

I will be having a PET scan which is the test I tend to have trouble with. The 24 hours prior requires you to have no sugar, caffeine or exercise. Then no food or drink after midnight.
The lack of food and caffeine triggers migraines for me. This will be the first PET scan since the changes I have made eliminating foods that cause inflammation.

Although I still have some headaches, I have not had a migraine for a while and the headaches are reduced tremendously. We will see how this plays out on Friday.

I will have my lab results and PET results on Friday when we meet with Dr. A. The tumour marker tests take a bit longer to get back so I will have to wait on those.

The last testing came back showing "No evidence of disease", however, the tumour markers were elevated.

We will be praying for NED once again and for all labs to be in "normal" ranges. We would love to have you join us with your prayers, thoughts, well wishes, fingers and toes crossed!!

I feel unusually calm so far, only moments of worry now and then. Keeping my time busy with swimming lessons, Liam and watching the Olympics is helping! I know that God gives me the peace and comfort through all things.

This testing will mark 5 years as a Stage 4 cancer survivor...Facing Friday with Faith.

4:17 AM

Today I woke at 4:17 AM with my head spinning..wondering..thinking. This time of the day is, to me, the middle of the night. So, this is quite unusual. This also happens to be my 48th birthday. When you are a 4x cancer survivor of nearly 14 years, every birthday is a miracle! So, no I do not mind at all sharing my age.

What had me up at 4:17 am? I woke up thinking about my birth. I don't actually know what time I was born ( maybe 4:17 am), or who, if anyone was with Barbara, my birth mother on that day.

I thought about my kids when they were babies, and Liam, my grandson. So much happens in those first three months of life. But who was I with? Who held me, fed me, rocked me? Was I held or rocked or loved? Did I even have a name, what did they call me?

Somewhere out there someone took care of me from this first day of my life in July. I have always wondered who and would love to meet them someday if ever possible.

On October 26th, my parents took me home for good. They have been my mom and dad since then. As we celebrated my birthday this past Sunday with my parents I could see how much they love and enjoy Liam, my kids and my husband.
But...one thing really stood out to me. Seems simple in conversation but it meant a lot to me. We were planning a pool party outdoors that day. The heat and humidity were awful reaching  temperatures of about 109.
We talked about how we were glad we moved it indoors, especially with the baby and both my parents who have had some health issues lately.

My dad said they were not going to have been able to get in the water anyways.Yet, they were willing to come sit outside in that heat...just to be there on my birthday!

I still wonder about my BIRTH day and the following months. I am so very thankful for Barbara who was there on that day and made the choices she did, and for my mom and dad who have been there for every Birthday since.

Summer Highlights and Whats Next

It has been two months since my last post, I have definitely been neglecting my blog updates. Summer time is my busiest time of the year as my days are filled with teaching swimming lessons.
I am currently getting ready to begin Session 5, which also happens to be my grandsons first swim class! What a wonderful place in life to be able to teach not only my grandson but second generations of kids I taught when they were young! Along with a whole new generation...I am quite fortunate to be able to say " I love what I do for a job"!
Otherwise our summer has been filled with jet-skiing,spending time with our kids and grandson Liam, working on our yard and a very happy veggie/herb garden this year!
 
The decompression therapy ended in May. This treatment worked wonders for the pain I had in my neck & back as well as the tingling and weakness in my arms and hands. I do however feel it starting to increase again and plan to go for maintenance therapy as long as I need to. I begin that today.

At the end of August I return to my PC doc to have labs done. These will check my B12 levels, Vitamin D, Magnesium, thyroid and cholesterol. I have not added the oral vitamin D because I am in the sun for about 3 hours a day which SHOULD  be giving me my daily needed amounts. I continue to take medication for the hypothyroidism and B12, both seem to be fine. No side effects that I can notice.
Unfortunately, many of these problems develop from cancer treatments. Most likely the  hypothyroidism was caused from radiation to my neck. Also, our bodies can not always absorb the nutrients as well from certain medications which may explain some of the deficiency's.

I continue to work with my dietitian following the LEAP program. Now in my 3rd month and feeling better than ever! No migraines at all since my last post in May and the headaches are reduced by a good 95 %! Have them now and then but I can usually pin point a questionable food that was consumed. For the first 6 weeks the immune system is able to calm down and the body to detox.
At 3 months I am allowed to start adding certain foods back into my diet, one at a time to see how I react. I am actually a bit nervous to start this for fear of feeling bad again. But...for my birthday here in July I am looking forward to watermelon!!
It is not an easy program, but it is manageable...and well worth it! As mentioned before along with the improvements with migraines/HA I continue to improve in the areas of energy, less fatigue & anxiety, sleep, clearer thinking. An added bonus, I have lost 15 pounds and am at my goal weight!

Now to just get back to the gym to keep my body strong and stretched. I get a few yoga classes in but distance swimming and cycle are on hold till my swim lessons end. I don't have that much energy :)
Next up- August 3rd are my next scans, labs and oncologist visit to go over the results.I am trying hard not to focus on this and worry, but it is hard. Chris and I would love for you to join us in prayer for these upcoming tests and results.
Will try to update more often so these posts are not this long....Thanks for stopping by....

Liam's first tube ride!!

What I learned during my Hiatus was.....

A lot! My March Hiatus was taken at the beginning of March for a month. A month turned into nearly 3 months. I have realized it was much needed and I am so glad I took this time to work on "me".
I would love to share the different paths this part of my journey has taken me on and the results thus far.
Step one was decompression therapy. I am still going once a week and it continues to be very helpful with the pain I was experiencing in my neck and spine.The changes have been amazing and I feel much stronger in these areas. Best of all I don't need continual pain medicine and neck rubs to ease the pain. I am not sure it helped with headaches as much as I had hoped and I think this therapy has done all that it is going to do for now.

I did find a new primary care doctor that I am very happy with. She was worth the 3 month wait to get in as a new patient! She took her time with me and was very understanding and receptive to how I have chosen to live my life as it pertains to my health care needs. I needed a doctor who is ok with exploring complimentary care along side of conventional care. This has worked the best for me. She is  pleased with the changes I have been making. I was also looking for a doctor who understood I want to be on as few medications as possible, pertaining to meds used for sleep, anxiety and bouts of depression. To date, most docs encourage me to stay on these with the mindset of "you have stage 4 cancer, it's ok to be on these meds".And I agree, until the person/patient feels they do not need this help anymore. Many of these meds are meant to be temporary. Unfortunately, I think we as stage 4 patients tend to be seen as "temporary" and therefore there is not a lot of concern for the long term use.

I did have labs done which showed I am deficient in B12, vitamin D and magnesium,as well as having hypothyroidism. I am taking medicine for that and B12 for now. Can only add things in one at a time.

I also received my LEAP testing results and am currently working with a dietitian.The results were quite surprising. I have allergies/sensitivities to 30 foods, with the main 3 being chicken, cows milk and rice.By removing these foods, all 30,  from your diet it allows the immune system to calm down and the body to detox.I am on my 5th week and the results have been incredible!

~ fewer headaches and migraines! The severity of both lessened quite a bit and regular Advil was able to control the last migraine. That would never work before.
~ energy is up and fatigue is down! I needed to sleep about 2 hours everyday before with a terrible sense of fatigue. If I need to rest now, it is short and I usually don't fall asleep.
~anxiety is way down!  After 5 years of continual stressors my body seemed to stay in a constant state of anxiety. It is now nearly gone and this medication has been cut in half so far!
~sleeping is better! The big change here is I am tired at the end of the day and ready for bed. Before my body was so uneasy that I couldn't sleep. I am now completely off medicine to help me sleep and just using a small dose (2 mg) of melatonin for sleep.
~Overall I have noticed clearer thinking and a calmness I  have not felt in many, many years!
This has been life-changing! I am so glad I took the time to explore the complimentary care in combination with conventional care! Physically I continue to swim, cycle and do yoga...all have been instrumental in this process.

So, I will continue on,as this will be a life-change that remains on-going, but my Hiatus for now has come to an end. I have swimming lessons booking up my summer quickly and have gone back to teaching!

I Survived!

Did you have a favorite post from the A-Z Challenge? I would love to know which one you enjoyed :) Thanks for following along!

Z is for zzzz's

The A-Z blog challenge has come to an end. I have once again enjoyed reading, writing and being a part of this challenge.Thank you to all of you who followed along, left comments and shared your blogs! With an hour and a half to spare I am now going to catch some zzzzz's!

Y is for Yin Yoga

As I have continually looked for different disciplines that help me get through the day to day as a stage 4 cancer survivor there has been one practice in particular I have come to love.
The class is called Yin Yoga. We practice holding poses for anywhere from one to five minutes. During this time your concentration should be on breathing and relaxing into the stretch or pose without having "monkey brain". Your thoughts should remain focused on your breath.
I have found the discipline of holding, sometimes difficult poses for prolonged periods of time while keeping your concentration focused has been so helpful.
I have found  my strength, flexibility and endurance have greatly improved. Not just in yoga class but in other sports as well like swimming and biking.
The mental discipline has also been incredibly helpful especially during times of tests and treatments. When  you have to lie still for long periods of time having MRI's, Pet Scans and the like done, the practice of Yoga comes in very handy to help you relax and concentrate.
I walk away every time feeling less stress and anxiety than I felt when I walked into my Yin Yoga class.

X is for X-Terra

I have always wanted to write about my "dream' car, a Nissan X-Terra for the letter X in this challenge. Just didn't have a reason other than I would love to someday have one. So, this is the story of how I almost got my X-Terra.
 As I mentioned our camping trip did not start out well. About an hour into a two hour drive we were stuck in traffic and my trusty Pathfinder, loaded with kayaks, bikes, gear and pulling a camper begins to overheat. We needed to get off the highway. We pulled off and barley make it to a Chevron station with smoke pouring out from the hood.

As we sat there stuck, I was quite impressed with the helpfulness of complete strangers when they saw we were in trouble. A few places were suggested and after two hours of sitting in the gas station parking lot we found a place that could fix it...for the next day. Hmmm.
Thankfully, our son, who will do just about anything for anyone, came to our rescue! He helped unload all the gear, hooked the camper to his truck and drove us to a nearby campground.Even though we did not get to our original destination, our vacation was saved!

As my Pathfinder was being worked on Chris and I talked about the fact that it may just be time for that X-Terra.
Two days later another of our son's drives up to pick up the Pathfinder for us. Tis great to have such wonderful sons :) It turns out it was something minor compared to what we had first thought. So, my trusty Pathfinder is back and running and I will just have to wait a bit longer for that X-Terra, which is just fine with me :)

W is for Wierd!

My husband and I love to ride bikes, mostly trail riding. However with all the "injuries" to my neck I am not supposed to ride on rough trails.
Well, we decide to go mountain biking and ride the "yellow" trail, the easy one.
It started out exciting. Getting on our bikes, heading into the forest to ride! As we approach the trail I am already asking " are you sure this is not going to be too rough for me"? Ladies, our definition of too rough and our husbands are NOT the same!

We continued on,I enjoyed a lot of the ride, complained most of it. Unfortunately my headaches don't take a vacation just because I  decide to and I had one during this ride. Rocks, stumps, twists and turns just did not make for a fun morning for me.
It gets better...my husband stops and gets off his bike and says "do you see it"? I am thinking "do I really want too"? A 5 foot long black snake is right on the trail in our path. Chris gets a long stick and pokes it. Snake plays dead. Then Chris tries to flip it over, snake moves! then it slithers back into the grass and up a tree. OK, freaked out now!

Ride as fast as I can past where the snake was and try to enjoy this bike ride. I look up to see cow sculls and jaw bones nailed to several trees along the path! "What in the world, where are we"?? Now, this is getting weird!
I am really not having fun at this point. We then realize we missed our turn and are now on the "green " trail, which of course is more challenging than the yellow.
Chris is feeling very bad for me now. After eight miles in the woods he gets us back safely to our campsite as fast as possible and our very weird bike ride is over.

V is for Vacation

                               We must rest to recuperate....

Mark 6:31 And he said to them, “Come away by yourselves to a desolate place and rest a while.” 

U is for Under the water

From the moment we arrived and I stared across the lake I thought to myself "I have to swim across that".

 Where we live swimming in April is considered a bit too cold and maybe a bit crazy for swimming. For me, it's the perfect time of year to swim. Yes, that first step in the water is cold, refreshingly cold. Next is the moment you either tip toe in, tourchering yourself or just dive in and under! The latter is my preference.
While we sat staring at the lake on Thursday I said to  my husband "this is it, this is the time for my swim". Unquestionably an odd time for me to take this challenge on. It was later in the afternoon, I was tired, and we had just finished an underestimated 8 mile mountain bike trail ride.

But...it was the perfect time. The water was calm, no boats whizzing past. It was now or never. As I got ready, swim suit..goggles..towel...water, my husband got the kayak and himself ready.

                      Off I went, taking that first plunge under the water.

 Trying to keep the kayak on  my right side so I wouldn't wander off course. I wandered. Swimming to the left, to the right, into the kayak, into the paddle, maybe even in a circle. Oh well, I couldn't see a thing under water and aiming for "a tree" when the whole shoreline is treed is harder than it looks.

However, with my hubby's guidance and a few taps with the paddle I made it across and back! Every now and then as I was swimming I would look down and wonder " what is under the water"? No...don't think about that, just keep swimming!

T is for Tikis at Twilight

It looks like I will be posting the remainder of the challenge all at once. I have kept up with it, from a hand written note pad while on a week long camping trip. 

My husband and I have been living in the great outdoors enjoying this beautiful spring weather!
As many of our camping trips go, this one did not go as planned right from the start. Our plan to camp at a new campground at Lake Arbuckle in Oklahoma was abruptly changed to a campground much closer to home. More on that story in a following post.
Needless to say our unplanned trip that should have taken 45 minutes took us 7 hours from start to finish. The finish being camper set up, sitting in our comfy camping chairs mesmerized by the lake with the initial sigh "ahhhh".
This is that perfect time of day, right before it gets dark, at Twilight. Just the right moment to light the Tiki's.

S is for Swimming to Antartica...Tales of along distance swimmer

Each year I a participate in the A~Z challenge I like to suggest a book or two I have read that has influenced my life in some way.
Since I decided to take a little break fom running and returned to my love of swimming I felt this book would be appropriate for this year.
Legendary  swimmer Lynn Cox does a wonderful job at not only engaging you in this sports memior but also fills the pages with descriptions of all the people, places and events that take place during this time in her life.

This is a story that will inspire, teach and touch you. My husband and I both read it and couldn't put it down. I hope you pick up a copy and enjoy this book as much as we did!

R is for Redefining

Nearly five years ago my husband and I sat in the doctors office waiting for my tests results. You know, just like they show on TV...THAT moment we all dread and fear.

My oncologist, his nurse and another person, maybe she was an intern. I am really not sure, were all in the room. What I am sure is she was there to "observe" a patient being told the cancer has spread. For whatever reason, it did not register to  me what that REALLY meant...stage 4, metastatic breast cancer. A short time later I was receiving radiation and saw those words "Stage 4" on my report...and it hit me! I AM STAGE 4!

 Although I knew what that meant I decided early on that only God knows His plans for my life, not doctors, not statistics,not anyone. I asked my oncologist to never give me the "stats". I did not want to know. His response was " have you noticed I haven't"? He too believes that only the Lord knows.

Many people have a vision of what living with stage 4, or an "incurable" cancer looks like. Sadly for many people with cancer it is what most of us envision.I live with that fear all the time of my life changing, loosing abilities both large and small.

However, while God gives me the strength, ability and desire I will continue to redefine what life with stage 4 cancer looks like. I have lived more in these past five years then in many years prior.

I have been blessed to reach some mighty goals like running half and full  marathons, climbing a mountain,kayaking a river and hiking to hidden waterfalls, writing, traveling to wonderful places in the world, teaching, training and sharing my passions with others.

Most of all, after nearly 14 years of having cancer, I have seen my children grow up, get married and I have become a Nonna. My husband and I are loving this place in life we are at and as long as the Lord allows I will continue to set and strive for many more goals, adventures and life experiences.

There are many survivors redefining the face of cancer and what life looks like, I am just blessed to be one of them.

redefining

Q is for Quilt

                       This is the story of how a beautiful quilt came to be.
 After my in-laws passed and all the "children" were helping to empty their home I ran into an unopened cross-stitch quilt. My mother-in-law was very talented with all kinds of crafts. This was simply one she had not started. It particularly caught my attention because of the words from a song stitched on the side that I used to sing to my boys when we would go outside and look up at the moon. "I see the moon, the moon see's me, God sees the moon, God sees me".
I decided to take it home with the thought that "someday, I will be a grandmother and make this quilt for my grand baby".
Well, it was not long after that, we found out we would indeed become grandparents. One of my first thoughts was "The quilt"! How am I ever going to do that in 8 months?
I slowly started on it and realized very quickly I would need help. I went on FaceBook and created an event.
                              CROSS-STITCHING QUILT FOR LIAM
It read like this;  
Can you Cross-stitch? If so, I am looking for some ladies that would like to be a part of an old fashion quilting circle! Several of us have been working on this beautiful quilt for my grandson Liam. If you would like to be a part of our quilting circle, read on!
This is how it works. You simply choose a week (s) you would like to pick up the quilt, work on any section you would like and return it one week later for the next person.
All the materials are included and thread is sorted. This quilt for little Liam will be made with many hands and hearts ♥

The response to this was incredible! All together we had 14 wonderful ladies work on the quilt, pressing for time to have it finished before Liam was born.
Here are a few of these ladies working on the Quilt

Aunt Tammy, visiting from Hong Kong

Great Aunt Suzie

Liams Great Grandma

cousin Brenda

 This Quilt made it's way from one home to another. There were even some husbands that lent a hand who shall remain anonymous. Mostly the husbands wanted to know when the quilt would go to someone else so they could have their wives back!
It was a pleasure and a joy to participate in this quilting circle of sorts. We delivered the quilt to Kevin and Nikki at the hospital while we all waited for the arrival of Little Liam.
                        The finished Quilt before adding the piping and backing.

                                       After washing, hanging out to dry

                                             The completed Quilt!

 

Optimistically Patient...

Ok, a little behind here so I am combining O and P together. I have been busy adjusting to some big changes in my life, and with all change it takes time and patience.
Yesterday I recieved the test results back from the MRT test to see if I have any food and or food/chemical allergies. The results were quite interesting. The top three allergies were to milk, chicken and rice! Not was I was expecting. Then there are 27 other food/ chemical sensativities. All of which are now removed from my diet.
This is where patience came in to the picture for me today. Because so many of the foods I CAN have need to be purchased from a health food store I drove out there today to go shopping. Some of these items I didn't even know what they were, much less how to prepare them!
On the way, there was a traffic jam on the highway so I decided to try to go around it and go the back way. OK, all of you who know me are laughing because I have no clue when it comes to directions. And yes, my handy Garmin was at home...of no use to me.
Then my husband, who IS good with directions spent a half an hour getting me out of the back country roads I managed to get myself lost in. PATIENCE...on both our parts here.
I finally  make it and spent another two hours shopping for all this unknown food in all the unknown places. I swear I circled the store four times and asked the same workers questions till I drove them crazy!
Now,I am trying to remain optimistic and praying my headache doesn't start up. All the triggers were in place: stress, tired, past lunch time, past a dose of a daily medication....but, NO HEADACHE!
Three and a half hours later I make it home, with a surprisingly large amount of energy and cook a birthday dinner for my hubby.
It is now around 10:30 PM, I feel great and best of all I am going to bed without a headache tonight!
This is day 2 of removing the "trigger" foods from my diet....today I am optimistic, full of hope and waiting patiently to see how it goes.

N is for N words

I  decided I do not like the letter N tonight. My mind has gone blank. So, I asked people for words that begin with the letter N. Hoping to be inspired by one of them. Instead I have found this to be quite amusing.

Ok, all you late night FB ppl. I am having trouble coming up with topics to write about for the A~Z blog challenge. Please give me a word, topic or sentence that begins with the letter N....I have 45 min to write it! Help! The conversation goes like this....

• • K says~ Nothing, Naked, Nucleus, Neon, Neo-Nazi, Nepotism, Nightrider, Nark, Nerd, Nacarat, Nainsook, Narcohypnia, Narcolepsy, Narthex, Nephrolith, Nervine, Notonectal...any of these help??? ;-)

     
  • Me~ you looked on-line, those are not your words...LOL! Or, Nikki gave them to you :)

    Nainsook, what the heck is that??
  • 
    
  • K say~  Nainsook is "fine cotton fabric..." ;)

     
  • Me~Trying not to wake up dad laughing!!

     
  • K says~Or you could write on Neovitalism, the theory that total material explanation is impossible...???
  • Me~ What???

     
  •  T says~ What about being a " nonna" / grandma?!!!
  • Me~ I figured people might be tired of my Nonna pride by now, but a great topic non the less :))

     
  • T says~  No way people could get tired of it! It's one of life's most amazing blessings! 

     
  • K chimes back in~"None-the-less" is an 'N' word as well...

     

    L joins in~I like nightrider!Or nighttime! Lol 
     
    KC joins in~ Kevin's words crack me up!! What about "nightly" or "night time" something you enjoy doing in the evenings?
  •  
  •  L~says~ Never give up...That could be a word! :-)
  •  
  • and from the cell phone peanut gallery there was....Nutrition, Nuisance, nosepickers, nostalgia, neighbor, nerve, NED, new,Nerd, niceties,northern, nakedness and a few I will not write!
  • And thank you BIG NANCY!!! 

M~ is for a Man Missed Much

Today I wanted to share about a very special man we all miss very much. This man was my father-in-law Ed, and today was his birthday.

I met Ed when I was 15 years old and was just a neighborhood kid that drove him crazy! I am sure he wondered why I was always at their house. If I wasn't there I had this terrible habit of calling during dinner time, 6:00 on the nose! He would answer the phone and ask me " Clink ( my nickname he called me) what time is it"? I would say 6:00, then he would hang up. It really is kind of funny looking back on it now.

As a teenager we all thought he was so much fun. He took us out on his sailboat, water skied with us, went camping together and so much more.

One of my favorite memories was Ed coming out on Christmas morning wearing his red Christmas gown and stocking hat! He loved making sugar cookies with my mother-in-law Lois. Every year we all received lots of delicious cookies. I will always remember the day Ed, myself and friend Schmitty all baked cookies together. We were all covered in flour and frosting by the end. Whenever he baked he put a dab on his nose and ours :) 

Ed absolutely loved his family and looked so forward to any and all family get togethers. He was a man that always wanted to know what was going on in your life and was genuinely interested.

Our family is huge and he played such a big part in all of our lives. There have been a few great-grandchildren he was never able to meet. Our grandson Liam is one of them.So, we plan to tell Liam all about his great-grandparents and how much Great-Grandpa M would have loved him.

He collected wind-chimes and had lots of them on his porch. We now hang  one of his bells on our back  porch. Every time I bring Liam out there I hold him up, he grabs the bell as I say "Liam, ring the bell, say I love you to great-grandpa.He holds the bell and swings it back and forth, making it ring nice and loud. With a big smile on his face  he looks up at the bell towards heaven, where this special man that is missed by so many now lives.

L~ is for Little Liam

                                              The Love of my Life........