Tuesday, November 25, 2014

KIM AND ME AND DAYS AT HOME

Anyone who knows me knows that I readily defend the choice of being a stay-at-home mom. While it should be as equally respected as a working mom's choice to spend her days in the business world, stay-at-home moms (SAHMS) too often today are maligned and made to feel "lesser than" their counterparts. Made to feel that raising their children as their full-time job is less worthy than bringing home a salary. That gets my dander up. 

I was a SAHM and loved my choice. I got the opportunity to become a nurse, teacher, guidance counselor, dietitian, recreation director, librarian and master-molder-of-a-little-soul. The role is not everyone's choice, but it was mine and I don't regret it for one second.

Kim was my best SAHM friend. We met in Duluth's awesome Early Childhood Family Education program. Kim and Dan's Ben and our Sam were both 2, bright, and social. We discovered we lived only 4 blocks apart so we became fast friends. Lots of play dates, mom talk, and simply supporting each other in these wonderful new roles we had assumed. Kim was a human resources director and I was a gerontology consultant when we had our babies and chose to put our careers on standby and stay home. Each of us had bought modest homes whose mortgages could be covered by our husband's salaries so if we ever decided to stay home, we could. We did. And we reveled in our friendship and in our boys.

Kim and Dan left Duluth when the boys were about 4 and we continued to have occasional mom/son reunions with them. Though we do not see each other often anymore, Kim will always be one of my dearest friends.

A few days ago I got a letter from her and her words brought back into vivid focus our SAHM lives and how much they meant to us both.

In her letter she writes that a friend of hers was talking about someone Kim knew, and in the course of the comment, Kim's friend said, "....she's JUST a stay-at-home mom."

Kim's letter to me continues:
"Mary, I was so offended. And this from a long-time friend. It made me reflect and recall all those years ago and our beautiful supportive connection over our two precious sons. Our like-minded, soulful devotion to what we knew in our hearts and minds to be right---that we would devote our days to shaping their lives. It made me smile and thank God for my stay-at-home friends that "get it" and share a value we don't need to justify. Not that all those days were perfect days, but I truly see all our hard work reflected in the beautiful young adults they have become."

It tickles me that Kim still shares with me the strong feelings we had about our SAHM years. Did we scale back our budgets those years? Absolutely. But we never felt as if it was not worth it. No matter what ignorant people may say about the choice that we and hundreds of thousands of other current SAHMS make, all of us in "the SAHM club" know that our choice is one we will never regret and one most of us can say was the best thing we ever did for our families. It grieves and angers me when working mothers demean the stay-at-home contingent.

A young friend of mine named Meredith just had her first child. In August she told me that she wanted to work at least part-time after the baby was born. Eli is only 6 weeks old, so she has not made any final decisions yet. She did say to me on Thursday, "I don't know if I could ever leave him and go back to work." I told her those were my exact feelings 23 years ago.

If Mere does change her mind and decide to find a job, good for her. If she decides she wants to stay home with Elijah, good for her as well. She will make the right choice for Eli and herself. I only hope that if she decides to be a SAHM that some misguided woman does not try to make her feel as if spending her days raising her baby son are somehow less valuable than spending them in the workplace.

Kim, I miss you and love you, girl!! Our stay-at-home days together are still so precious to me, and I am so grateful I had you to share them with!!


Friday, November 21, 2014

CONSULT RESULTS

My consult at the University of Colorado Cancer Center was well worth the expense of the trip, and yielded information which we did not expect.

I met with Dr. Ross Camidge, the man who is the nation's leader (maybe the world's) in researching treatment for the ALK mutation of non-small cell lung cancers. This was what I presumably have had.

Then again, maybe not.

Dr. C has sound reasons to suspect I have been misdiagnosed. With ALK, I SHOULD have responded much more aggressively to both the infusion maintenance drug I was on for a year AND the oral chemo I have taken for the past 2 years. With ALK, the disease should have responded much more rapidly. Mine has been in a holding pattern, more or less.

He discovered that the tissue which was biopsied (which determined the ALK) was done using a process called staining. The process he uses to do molecular-level testing on tissue is FISH (don't ask me what it stands for), which is the only licensed and standardized way to test this. Non-FISH testing can yield false positives.

I have plenty of emotions about this possibility of being misdiagnosed, but the negative ones do not help me at all. Resentment just breeds anxiety and I will try instead to be grateful that my lung program nurse practitioner pushed me to go see Dr. C in the first place, and that the information may be useful in the present.

After we see what my next PET scan shows (3 weeks), Dr. C would like me to come to Denver for a new biopsy (done through the lung and not the throat as I had here) and the FISH testing which UCCC would do themselves.

If I have an entirely new type of identification for my cancer, he may have some targeted chemo therapies to offer me, depending upon what it is. IF I do, indeed, have ALK, then I am an odd-ball case which does not respond in the way that most people do. 

Whatever they find at that point, we then will entertain our options and make decisions. Our faith in God's promises to heal me have not faltered. My cancer, no matter what kind I have, is considered medically incurable, and God is still the only "option" I have for total healing. I do not deviate from that. Somewhere on this very long road named cancer, I believe He will show His hand and remove every trace of disease from my body. My faith will not move from that.

Until that happens, I will continue to ferret out knowledge, all given by God, which I can use.

Dr. Camidge is such a class act, a British man, who inspires great confidence. I will choose to have him "call the shots" from here on, meaning more trips to Denver. UCCC is where I need to be for this lung cancer. They are at the epicenter of the research.

And the funniest moment of the consult?  He knew that I had to stop taking Zykadia, one of his drugs, which I have been attempting to take for a month, which was killing me with side effects and stealing my life, and in the end was shooting my liver values off the charts. He looks at me and says, "That Zykadia is the most terrible drug EVER, isn't it?" 

I told him how affirming it was to hear that!! He said, "I created it, but nobody is handling it well. Nobody. In two years, it will be off the market." Loved his honesty and humility.

Fortunately, he has at least 3 other drugs in clinical trials for the ALK, and 2 others that are now FDA approved. I do have choices If ALK is my cancer.

Dick and I haven't road-tripped in many many years. We learned we don't have the stamina for the 10-12 hour driving days we used to have. A motel at 4:00 in the afternoon is our speed now. We learned that driving 70 instead of 75 yields a 3-mpg difference in gas. We learned that the best donuts in the entire world are in a dingy little main street bakery in Brush, Colorado, run by a sweet old geezer for the past 22 years. They were 8 inches in diameter and to die for. (And yes, we got off the freeway on the way home to get another one, and oohed and aahed all over again!) We learned that I-80 to Denver is about the most desolate drive on the face of the earth. 

We were able to see our niece Anna and her family, husband Tim and the two kiddos, for dinner one night. They live in a northern suburb. They made a wonderful meal and we had a great visit. It was so special to see them and to now be able to picture them in their home and neighborhood.

Thank you all for praying about this consult. Every prayer was answered. God was there, and meeting all of our expectations for the consult and the trip. There was not one flake of snow on any road, miraculous after last week's fiasco across the midwest and upper midwest. 

God is good. All the time.



Friday, November 14, 2014

CROSSROAD

I am strangely calm about the crossroad ahead for me. I am going to Denver next week to consult at the University of Colorado Cancer Center with the one researcher who has developed two generations of drugs that have shown some response to my type of cancer.

I clearly got the sign on Tuesday that the 2nd generation drug is not going to work for me.

This puts me at the "Y" in the road. Either Dr. C has another drug in the works for me to try, or God and I blow this pop stand and hit the road by ourselves.

Like I said, I am strangely calm. Call it faith. Call it unwavering trust in the One who loves me passionately and holds my life in His hands. By the end of next week I should have all the colors I need to paint the future picture of my life with cancer.

And now, can a mother shamelessly promote her son?

Sam has been named moderator and co-host of a new sports radio talk show in Minneapolis called The Wake-Up Call on Sunday mornings from 8-10. This is SO his element, and we are so proud of him and cannot wait to tune in. He was born to do this!!

If you are sitting around on Sunday morning and would like the up-to-the-minute scoop on the Timberwolves, Vikings, Gophers and Wild, you can tune in and hear the show at 105theticket.com. Click the large LISTEN LIVE link on the top of the webpage. If you want to tune in, but can't until later, you can access the show anytime via the PODCASTS link.

I would appreciate prayers for traveling mercies next week. This blast of winter weather could make driving less than easy, so please pray hedges of protection around the car!!



Wednesday, November 12, 2014

NEWS

I feel like I am the protagonist of a book, not called  "Where's Waldo?" but called, "What's Happened to Mary Today?"

I feel like I am the star of a bad movie, each scene offering another side effect, problem, pain.

So. Things have been worse than I ever dreamed. I have been walking down the path of liver failure without any knowledge, brought about by the chemo that is supposed to be shrinking cancer tumors.

When I picked up my blood work results yesterday, I noticed 3 values that were over-the-top high that are related to kidney/liver function. (For example, my alkaline phosphotase, with a normal high limit of 150, was 773.) I mean these 3 were off the charts.

They faxed the results to my doctor and I waited for a call back.

GET OFF THE CHEMO RIGHT NOW.

Well, folks, if you don't think God makes decisions clear, think again.

From a human standpoint, the choice is: growing stage 4 lung tumors or liver failure? Gee, what should I choose?

From God: Trust me, daughter. Do not fear. This is all in My hands.

I will get a blood draw in 1 week to see where the levels are. In the meantime, Dick's and my obvious pray is that there has been no permanent liver damage from this.


This makes the trip to Colorado (still waiting on them to call) even more significant, because if there are no other drugs in clinical trials, then I am God's. All His, to heal or not to heal. I have had faith for 4 years that it will be HEAL. Maybe this is where the rubber meets the road.

I know it will take several days for the drug's side effects to leave my body, but I am looking ahead to a day of no abdominal pain or queasiness or malaise. And it would be more than wonderful if peristalsis (which has been totally dead for 4 years) would return.

Satan is not writing this story, even though he wants to be. This is God's story, a story of HIS glory, and while the devil slithers onto each and every page, he knows he has been defeated and that he is a footstool under the Almighty's feet. At the name of Jesus, he bows. The pen is still in God's hands.

We'll see what the next page brings. Thank you for praying for any liver damage.


Saturday, November 8, 2014

UC BOUND

It looks as if my insurance is going to cover the cost of a consultation at the University of Colorado. The researcher/physician who has been developing the chemo drugs to treat my specific type of cancer is going to assess all my medical records and meet with me to discuss my current situation. He will be able to tell me if the participants in the original clinical trials ever became "less sick" over time while taking this Zykadia, and will be able to tell me about anything new he has in the works for 3rd generation chemo drugs.

I am so tired of feeling sick every day. Dick and I are ready for me to regain my life. If Dr. K can offer me no hope for the side effects lessening (and there are many of them), and has nothing else I can try, I am going to go off the drug after my next PET scan on December 18.

So, it looks like we are Colorado-bound. I should be getting a call on Monday or Tuesday from them to set up the appointment. I am thinking we will able to do this in the next couple of weeks. Dick and I have not been on a road trip for many years. If I felt good, we would actually be looking forward to the new scenery. As it is, I can only hope that the driving will not increase my nausea or abdominal pain.

It will be good to get some answers, no matter the outcome.

Wednesday, November 5, 2014

BIRTHDAY 23

When Sam was three, I wrote a book for and to him, documenting our 7 arduous years of infertility. I wanted him to know how hard we fought to conceive and carry him.

The book starts with the following:

Dear Sam,
This is our story....Papa's, mine and yours. It comes from my heart with love. May it always remind you that God gives treasures hidden in darkness when you put your life and your dreams into His generous keeping.

I love you,
Mama


It ends with the following paragraph:

At 11:21 a.m., November 5, 1991, with one last massive push, Samuel Hieb Ekstrom entered the world. Five pounds, twelve and one-half ounces. Nineteen and one-half inches long. Strawberry blond hair. Blue eyes. Crying mightily. Alert. Precious. Healthy. And so, so, so, so loved. A baby born to arms that had been empty for so very long. The fulfillment of a dream. God's gift. God's incredible "yes" to years of prayers. All wrapped up in a tiny wide-eyed bundle. His name means "asked of God." His life will be dedicated back to Jesus....with indescribable thanks....and he will grow up knowing and believing that Jesus can do anything, and that His gifts put our grandest dreams to shame.


That was 23 years ago today. The emotions of his birth are as fresh as this morning's dew on the grass. Tears can still come unbidden at the thought of the magnitude of the gift we were given that morning. 

Throughout all of our lives, we are given many gifts that are eventually worn out, lost, threadbare, eaten, forgotten, used up or rusted. 


And there are other gifts that keep on giving forever.



Friday, October 31, 2014

DECISION MADE

When you raise your family with intentionality, with the goal of forging an interconnectedness between the members that is strong and unwavering, you step right onto the set of It's A Wonderful Life.

[George, in his alternate universe, is taken by angel Clarence to the cemetery where he has discovered his brother Harry's tombstone

Clarence: [explaining] Your brother, Harry Bailey, broke through the ice and was drowned at the age of nine. 
George Bailey: That's a lie! Harry Bailey went to war! He got the Congressional Medal of Honor! He saved the lives of every man on that transport! 
Clarence: Every man on that transport died. Harry wasn't there to save them, because you weren't there to save Harry. 
Clarence: Strange, isn't it? Each man's life touches so many other lives.


We all know the message. So many lives in Bedford Falls were affected by one man because George touched lives who then touched more lives who then touched more lives. George's life was never about just himself.

None of ours is.

The import of that lesson has not been lost on me. And this past week, as Dick and Sam and I took 24 hours to make some life-and-death decisions, I knew I could not choose any option on my own. It would be much easier for me to say, "Listen, this cancer and its treatment and side effects are mine and mine alone, and I will be the final decision maker about whether or not to forgo treatment."

Oh, yes, much easier.

But interconnectedness means that that decision affects the rest of two other's lives. It determines, perhaps, whether my husband has a wife and whether my son has a mom. Those are two roles which I do not take lightly. My life affects theirs and their futures. My choices without their being on board, turn me into a selfish wife and mother. 

And so we converged with prayer and discussion. And we found ourselves morphing into a classic Venn diagram. Dick being circle A, Sam being circle B and me being the AB overlap in the middle.

It is important for me to respect and honor the feelings of these two men who mean the world to me. And we finally found an answer which does that. Sam gets what he needs, Dick gets what he needs, and I am willing to orchestrate it all. I am very satisfied with the plan we have laid out.

I am going to try to get a consult with the makers of this current chemo I am on that is making life miserable. I will find out whether or not the clinical trials ever indicated a lessening of the side effects. I will find out whether or not there is a new drug that may be available to try.

Sam would like me to try to stay on this drug until my next scan to determine if, even at this low dose, it is shrinking any tumors. That could be 6 weeks or so. As ready as I am to get off this drug, I will do that for him.

We have agreed that if this drug is my only medical option right now, that it has taken my quality of life, and that it is not worth taking. Between the nausea and body aches and severe constipation and abdominal pain, spending most of the day on the sofa, it has robbed me of my life.

And we have agreed that at that point, we will take the faith in healing that we have held fast to for 4 years, and put it all in God's hands. We know He could have healed me even taking treatment, but He has not yet. If I am not on any treatment, He certainly gets all the glory!! Dick is very ready for this step of faith. I am too. 

I am not naive enough to claim that normal human fear will not enter our hearts if we abandon treatment. It may try to whisper to us, but fear will not live in that decision.

And so we have a plan of attack. Solicit additional information, look at other med options, and then, if necessary, get off the chemo.

I am ready to live life again. I have no desire to die. While I know heaven awaits me someday, I am very much NOT ready to go there right now. I have so many plans and dreams for the next phase of Dick's and my life. We pray that we can walk out those dreams together.