Endings and beginnings

2014 comes to a close in less than 13 hours, bringing the dawn of a new year. 2014 brought some wonderful things: the birth of granddaughter Abigail Virginia and the gathering of ALL the original five and their families equaling 8 adults and 3 children and one furry friend to celebrate Christmas and some not so wonderful things like the recurrence of cancer. But, good and not so good reside side by side and can bring great understanding and meaning to life.

2015 gives much to look forward to: the birth of grandson #2, more testing to determine that my cancer WILL BE ABATED and continued family gatherings.  This new year will be worth celebrating.

My hiatus from all things medical (except the Femara and a stomach coating med) was over the day after Christmas as I went in for a brain MRI and then a few days later for an upper GI series. I am happy to report that all tests proved normal (yup - my brain is still there in working order and my tummy rolls with the punches). If you have never had an upper GI series it is quite the experience!  Swallowing funny things that sizzle and pop, liquid barium in various stages all the while being placed on a board that tilts in all directions and following orders to roll from side to side, back to front. Quite the exercise!

Each tests eliminates what is NOT wrong with me while still trying to determine what is causing the ongoing nighttime vomiting which follows severe nasal and throat burning /pain and extreme post nasal drip. I have my theories after doing some self research and listening to my body. Now getting a doc to agree may be an achievement all on its own. Wouldn't it be great if I diagnosed myself after paying big bucks for the professional to do so?

I travel to Fort Collins January 15 for another GI test on the 16 - this time an endoscopy looking for tumors, ulcers, etc (can't imagine why I would have an ulcer - ha!) and then back Feb 13 for my three month follow up CT scan to check for tumor shrinkage.

Admist the waiting I continue to hold fast while considering using my experiences with cancer to start a local living with and beyond cancer support group. Something positive must always come from our trials.

On a completely different note, I adopted a beautiful one year old DLH female tabby with calico markings yesterday. Her name is Alexa Spice to be called simply Spice. She adds spice to my life! (And no, I was never a fan of the Spice girls - simply a name my five year old granddaughter dubbed my soon to be born grandson and I loved it!) Spice already makes me feel better and within just a few hours was very much at home. Being without a cat for six years was not who I am. I've aleays been a cat girl at heart. That girl is now back!

May 2015 bring you the desires of your heart and a life full of spice!

Blessings Abound

Even in times of frustration and trials there are abundant blessings to be found. After watching and waiting for news of the "state of my tumor" I met with my oncologist following a CT scan on Nov 14. I had 3 1/2 hours to wait between the scan and the results but was so excited to learn that the tumor has decreased nearly 1/2 it's original size. Thank You Jesus! It is now at 1.2 cm. It appears the Femara is working.  However, not without possible side effects.

Using Breaths Wisely

Back on April 29 when I was first diagnosed with stage IV metastatic breast cancer I honestly did not think I would be writing a six month post diagnosis blog. Mainly I kept thinking about my mom's own diagnosis with lymphoma 28 years ago. She was diagnosed in April of '86 and gave up the battle six months later in Oct. The parallel was just too great for my mind to get around. Add to that my youngest telling me in July that she was pregnant and my mind once again was quickly transported back to July of '86 when I told my mom that I was pregnant. The parallel was just getting way too familiar.  (Not to mention that mom and I share October as a birthday month!)

However, a lot has happened in the medical world in 28 years, for which I am forever grateful. Huge advances have been made and what was once known as a death sentence is now considered a manageable disease. I have yet to totally convince myself of this but as time continues to march forward I am confident that I can leave the medical parallel behind and look at a glass a little more half full instead of empty.

What parallels that I don't want to leave behind are the facts that like my mom I am a wife, mother and grandmother and I would give anything to parallel the love of family that my mom demonstrated to the very end of her life. Nothing was more important than her family.

All of our days are limited - essentially we were pronounced terminal when we took our first breath.  As the popular saying goes, "Life isn't measured by the number of breaths we take, but by the moments that take our breath away".  The past six months has taught me to count as precious every moment and use my breaths wisely.

Thank you mom for the lessons you are still teaching me in life.



Cindi
PS - Breathing has gotten much easier. Medical update after Nov 14.

Attitude

So much in life hinges on your attitude. Nothing new right? Positive attitude receives positive outcome. Again, right? Yet there is an incredibly fine balance between the Pollyanna attitude and the dark cloud attitude.  Glass half full vs. glass half empty. Authenticity requires the scales of positivity to come to rest somewhere in between.

Admittedly, I fall closer on the glass half empty spectrum. Have since day one and most likely will till I take my last breath. Simply how I am wired. Of course this doesn't mean I can't overcome (or at least be consciously aware) of the tendency to lean toward the negative. Years ago I learned the power of being real which can be construed as being negative.  Authenticity draws people into your circle and deep friendships are formed. I have also learned that not everyone can handle authenticity.

Cancer once again reminds me of these facts. When I am asked how I am doing I have to make a quick assessment; Can the one asking handle my honesty? How much do they want to know? Are they simply being polite? If I answer in complete authenticity will I be accused of being that glass half empty gal again?  It isn't always easy to discern how much to share.

Some are afraid to ask how I am because they don't want to upset me or are fearful I am tired of being asked that time and again. I understand that is a fine balance as well and often hard to discern. But I suggest you take the chance and ask, if you truly want to know, and be prepared for either a short answer (good day) or a long involved answer (bad day). If by chance you don't have time for the long answer then simply let me know you are thinking about me. No need to ask how I am.

So, how am I?  Still the standard short answer finds its way put of my mouth; "Good days and bad days".  The authentic, long answer is this;  I enjoyed eight weeks practically symptom free (no cough, no headaches, lots of energy, etc.) though depression still visited every now and again (the glass half empty syndrome) and life was pretty enjoyable. Recently my symptoms have returned bringing some new ones on board. Not only is this frustrating it is also a tad scary. Since I wasn't scheduled to see my doc till Nov. 15 I had to break down and call to speak to the nurse. After our phone visit it was determined that the doc would want to see me sooner than later. So we scheduled an appointment for this coming Friday (9/26) as I had plans to be in Fort Collins. In the meantime, I am to use cough syrup with codeine to control the cough. Both events, calling the doc and using the cough syrup were hard for me. Why on earth you ask?  This again is how I am wired. I see both as failures to operate on my own. A giving in or giving up instead of fighting. You may think this is insane but I'm simply being authentic with my feelings. My thinking is also wanting to fight against reality. When I see the doc and add a med the reality of cancer rears it's ugly head.

So, how am I? Still holding on but today the rope feels rather slippery.

Disclaimer: That isn't a negative comment, rather it's an authentic statement that has Pollyanna holding an umbrella.

Holding pattern

Have you ever been on an airplane where you were in a holding pattern either waiting for a runway to open up or the weather to clear so the plane could safely land?  Many times I've had that distinct privilege in my years of travel. Just recently our plane was descending upon the Boston runway when right before touching down we suddenly pulled up and away. The captain came on tho explain that there just happened to be another plane on the runway so we would have to circle back and make another approach after a slight holding pattern. (Good grief - another plane on the runway?  Who missed that tower people?). That was a jolt. Just when you think you are nearing the end of your journey suddenly you are back in the sky for a bit more travel time.  Much like life.

Holding patterns and surprises are not fun. They test our patience and endurance. Hmmm - Reminds me of  Scriptures - countless. So yes, life is full of holding patterns and that is where I am currently. Many have asked how I am doing, how treatments are going, when I see the doctor next, when is the next test, etc. After nearly four months of whirlwind doctors, tests and more doctors and tests I'm now in a holding pattern till November. Yup, November. Rather scary but must be that the doctor is confident that she doesn't need to see me till then. Right?

So here is a recap. Last scan determined that my tumor is stable. No growth, no shrinkage. My only form of treatment is a daily dose of Femara (aromatase inhibitor - i.e. estrogen blocker) with the intent to shrink the tumor(s) and affected lymph nodes. No chemo, radiation, etc.  My symptoms (cough, headaches, fatigue, back pain) are improving and actually pretty much disappear when I am in Boston (humidity helps tremendously).  My energy level is such that I am biking more (28 miles last Sat), started back on my Wii exercise program (though low level), walking daily and no more afternoon naps. Life has pretty much taken on a normal appearance.

Now the key here is the term "appearance". I look the same yet I am not the same. Nothing has changed but everything has changed. That may be good, that may also be bad. Cancer is now a forever part of my life and that is a reality that is hard to swallow. That isn't even a holding pattern because with a holding pattern an end is in sight. One knows the plane will eventually land. Then you can get off and walk away. There is no walking away from this cancer. But there is learning to live with it. And I will learn to live with it as I'm in the holding pattern till Nov. 15 when I have my next scan and doctor appointment to determine what is what. Till then I continue to hold on while circling.

Is it possible...

Is it possible to feel elated while deflated?  I traveled to Fort Collins Tuesday for an oncology appt and got the results of the genetic testing and am super thrilled that I am not a carrier in any of the multitude of cancers they tested me for. Greatly relieved and elated for my girls. They are still at risk but not nearly as much so if I had. Even identified as a carrier. A true Thank You Jesus.

The genetic results of course don't really mean much for me but it isn't always about me  is it?  What is about me is the fact that my symptoms (cough, hoarseness, felt breathing, headaches etc) aren't  any better. They seemed to be for about a week but have returned which is mind boggling to my doctor. She ordered a CT scan and the results showed that the tumor is stable.  Results of lymph nodes are inconclusive. That was the deflation part for me. Stable is definitely better than growth but I'm being honest here and what I really hoped to hear was shrinkage.  I'm also a little bummed (ok - sticking with the honesty - greatly bummed) when I was informed that the hoarseness may never go away because of vocal cord nerve damage. Not something that someone who likes to teach, preach, lead small groups, etc wants to hear. Time for a complete career change?  Sign language? Become a hermit?  Yup - I'm bummed.

So for now I stay on the Femara since I am tolerating it well and it has kept the tumor stable, to be rechecked in November with a comparison CT scan. In the meantime I'm to see a pulmonologist for help with the symptoms.  Another doctor and more tests. Yup - have I mentioned I'm bummed? 😯

But even in the midst of the deflation I still cling to hope. Hope for the clouds to shift and the sun to shine again. Holding on for the long haul.

"TEST" - my new four letter word.

As a kid growing up the very mention of an upcoming test through me into a panic. Especially the Weekly Reader Tests. I detested those things! I even remember very vividly on one occasion in early grade school breaking my pencil (on purpose and entirely in half mind you) thinking that would get me out of having to take the test. Little did I realize that the teacher kept an extra supply of No. 2 pencils for just such a purpose.

Several months later and yet another upcoming Weekly Reader Test (maybe that is why to this day I'm not a real fan of newspapers - just something about that newspaper feel and smell of ink) I was ill and could not go to school. This pattern continued on Fridays for awhile until my mother got wise to my sudden illnesses and drove me to school to speak with the principle. They put two and two together and suddenly my illness was diagnosed as dreading the "TEST". Such a strange child. I always passed those, and other tests, with flying colors yet still dreaded the days, hours and moments leading up to the "TEST".

Not much changed in the years following through Junior High, High School and College. Heck, even during my Master's Program the idea of taking a test was nerve wracking. But now I would give anything to endure those silly exams in exchange for the current exams -"TEST" - that loom large in front of me.

Now, don't get me wrong. I am ever grateful for medical advances that allow us to quickly and early make diagnoses preventing even harsher results. I just have to admit that I am not as brave as most people are assuming.  Nor am I as calm and collected as I might appear to the untrained eye when seen in public.

You see, the mere mention of the word "TEST" still sends quivers through my soul, elevates my typically low blood pressure and causes me to overheat. Today, the dreaded tests are medical and it seems that one simply leads to another. I have been injected with numerous amounts of dye contrast, swallowed cups of barium cocktails, slid onto cold tables and ridden through strange and loud machines, been X-ray zapped, poked, prodded and thumped, scoped and what have you. All in the name of "TEST". Only this past week did it dawn on me that "TEST" is a four letter word. And that it is entirely possible to dread and dislike things are that good and helpful in the long run for you.

The Bible has much to say about tests - consider them pure joy, they lead to stronger faith, grant patience etc. My favorite test Scripture right now warns us not to test God (Deut. 6:15) - see even God doesn't like tests! And then Matthew 4 when Jesus was put to the test. I gain comfort in knowing that even Jesus faced tests yet triumphed.

Yes, it is entirely possible to dread that which is for your good and in the end come away with flying colors.

In the meantime as "TEST" is my new four letter word and I wait for flying colors I will:

Cast all my cares (fears, anxieties and TESTS) on Him, because He cares for me.  I Peter 5:7

Breathe

There are over 5903 songs with the word breath/breathe in the lyrics. The term breath can be a physical, medical or spiritual term. There are at least 82 references to breath in the Bible.  The average adult takes 12-20 breaths a minute and does nothing consciously to make this happen. Meaningless facts? Depends.

Are you aware of the breaths you take and expel every minute or more? I wasn't until recently. Very recently actually.  The past few days I have become acutely aware of the effort it takes to breath, where before it was an natural response to a brain command now I am keenly in tune with the rise and fall of my chest. What I once took for granted (really not giving a thought about) now has become almost an obsession. At night I will lay awake feeling the air come in through my nose and exit the same yet I swear I can feel the path it takes as it enters, moves through my lungs and exits only to begin again. Often this pattern is interrupted with a cough. Sometimes slight and other times wracking. Know the phrase "pop a lung" when referred to a coughing fit?  I now fully understand the term. While this is far from a fun journey it certainly has been eye opening as I pay more attention to the way my body is uniquely created. Certainly not to be taken for granted.

I also am intrigued by songs that speak to breathing. Breathe On Me Breath of God, This Is The Air I Breathe, Your Are My God, Breathing the Breath, etc. Breathing is fascinating both in song and body.

While I believe wholeheartedly in scientific advances and all that medical science has been able to do in all realms of life I know that the undergirding factor is the master Master Scientist  and Great Physician without whom no advances would exist at all. The very One who breathed life into mankind from the beginning and continues to do so today.

So as you take your next breath be thankful for the ability to do so, the master design and the One who holds it all in balance.


The Spirit of God has made me, and the breath of God gives me life. Job 33:4

Backing Up...

Posting about my 'disease' was one of the most difficult things I've ever done and I wanted to keep it short and simple - long story short. However, I realize in the making of a short story some vital information was left out that could possibly be of benefit to another down the road so bear with me as I back up and create the longer version of 'my story'.

The past couple of years have been what I would term stellar years. I felt the healthiest ever, biking nearly 50 miles a week, swimming, walking, hiking.  In addition I was traveling a lot, enjoying the kids and being Nana, falling in love with Uganda, teaching the Bible, embracing a new calling to the ministry of "grief" and finding a special niche in bereavement volunteer work for a local hospice. All was more than swell. While vacationing in San Juan I thought I had gotten a sinus infection so made an appointment to see my GP upon my return. Was put on an antibiotic for ten days. Nothing was better so I marched back to the doc now with a dry cough and complaining of shortness of breath. (I had noticed while pushing the kiddos in a double stroller -70 lbs -to the park I was winded).  Chalked the shortness of breath up to being out of shape as the long winter and travel had precluded my normal activities for several months. Then one night I had a weird sensation in my left arm - which came and went several times and now I was experiencing spikey headaches that were debilitating first thing in the morning and in the afternoon after any activity.  Back to the doc - starting to feel like a hypochondriac.

This time a brain MRI was ordered for the headaches and all the other symptoms - raw throat, dry cough, hoarseness and arm pain (radiating from my left scapula) were chalked up to GERD (acid reflux).  Weird as. I had never experienced heartburn but I was told there was such a thing as silent reflux. So was put on meds for that. Several weeks later nothing was better and as a matter of fact I felt worse so I went back yet again only to be told I needed to be patient and let the GERD meds work.  Fine.  (Yeah right, me patient). We were now at about six weeks from initial onset of symptoms.

Sunday afternoon, April 27, Tim and I were returning from a visit to Fort Collins. I was sleeping and as we reached the 11,600 ft Vail pass I suddenly woke up with chest pains and shortness of breath. As we dropped in elevation the pain lessened but I had a nagging that would not go away. Something was not right. So after returning home and getting some things done around the house I decided I needed to go to ER fearing heart problems.

Multiple tests later I was told my heart was healthy BUT there was a spot on my lung. Needless to say we were shocked. Then my GP came in to admit me for further tests saying she was sorry about the lung cancer. Whoa! Hold on there doc!  Did you say "lung cancer"?  The spot had now evolved into cancer. I asked, "so, they know it is cancer?" To which she replied, looking stricken, "I thought you knew". Nope.

I was admitted to await a lung biopsy in the morning. Now let's go long story short. What should have been ab overnight stay turned into 3 1/2 days stay because in doing the lung biopsy my lung was nicked and I developed a pneumothorax which required a chest tube which required 3 days to heal.
That stay was pretty much a blur as I was in shock about the cancer but soon discovered it was not lung cancer but a breast metastasis presenting itself in my lungs (yup both) and chest between the lungs. Because it was a metastasis of a primary cancer I was stage IV.  Enter more shock and disbelief.

May 1st I was released from the hospital (10 X-rays, 2 CT scans, echo cardio gram, EKG, multiple blood draws etc etc later) and put on Femara, an estrogen blocker to try to shrink the tumors as they are inoperable. This will be the first line of treatment.

I saw oncologists here in GJ and then sought a second opinion in Ft Collins and have decided to seek treatment with the doc in FC. She is well schooled, specializing in breast metastasis and of all the docs has given me more hope by telling me that I need to look at this situation as merely a chronic illness much like diabetes that can and will be managed. She said her job is to keep me alive till a cure can be found. I love her outlook! She helps me in the "holding on"!


June 19 I will be seeing a specialist at the Dana Farber Cancer Institute in Boston, leaving no stone unturned.

So, how can my story possibly be used to benefit another?  One doc reminded me that being a breast cancer survivor does not mean I should put it out of my mind. Of course that is just what I thought being nearly 16 years out from original diagnosis.  I should not let it rule my life yet I must always have in the forefront of my mind the possibility of recurrence. A chronic cough, shortness of breath and hoarseness are good indicators of metastasis to the lung. Bone and joint pain could mean metastasis to the bone. Headaches could indicate brain metastasis. (My MRI was clear and my PET scan showed no bone or liver metastasis. Thank You Jesus!)  Learn what else to look for.

Be aware. Be diligent. Be pushy. Be your own advocate. Doctors are not God after all. They are just like you and me. We each have our own areas of expertise. Their's just happens to be medicine. But you know your body.  Don't be afraid of having the outside of your medical file marked PITA (pain in the ass). I know my file is marked in bright red letters.  And I'm proud of it!

PITA - the one "Holding On"!

I AM - Holding On

The David Crowder Band has a great song called "I Am" - the main premise is holding on to Jesus - the great I Am - during the storm.   Currently I Am Holding On.

Four weeks ago I was shocked to find myself back in the middle of the cancer storm. Sixteen years ago I had already navigated this dreary storm called cancer and came out the other side as a breast cancer survivor.  Now I find that the storm has once again enveloped me as I battle metastasized breast cancer in my lungs and chest. The fog of shock and disbelief has lifted and I find myself Holding On - sometimes barely by a thread and other days plunging forward with fierce determination to once again weather this storm.

Regardless of the doubt, uncertainty and emotional roller coaster I know that as I continue the pattern of Holding On I am not alone.

Thank you family, friends and most importantly, Thank You Jesus for being with me in the middle of the storm.

Holding On
Cindi