Monday, December 15, 2014

A NEW BEGINNING

I spent the week moving my mom into a new apartment. From an academic standpoint, it was all wrong. But in real life, it was so right.

In my Master's program for Gerontology, I had two focus areas: sexuality and aging; and death/dying/grief. I know a great deal about the grief process and how to work through it.

For years, when teaching death and dying, I have given the "party line".......research shows that grieving people, especially elderly people, should NOT make any major decisions or moves for 6 months to a year after a spouse's death. Research shows that often, those decisions, made in the middle of emotional angst, are regretted.

My dad has been gone now for 2-and-a-half months. And my mom decided to move. On nearly every level, this might have felt like a knee-jerk decision, and one that we should have cautioned against. But it felt so very right.

Mom had wanted to be on first floor of her complex from the start, but their name came up on the waiting list for an opening on second floor. She had never stopped wanting to be on the first floor. It was easier to walk down to the dining room and she was tired of elevators. The first floor units were designed with 15-foot ceilings, so they feel incredibly spacious.

A unit became available 2 weeks ago, and though it is smaller, it was love-at-first-sight. Their apartment had a north exposure, faced an industrial (and loud) air conditioner, and was dark. Mom's new place has a southern exposure with light pouring through large windows and a patio, and overlooks the lawn with pine trees!

I brought Sam's bed for her----which he has used for 17 years and doesn't even know yet that I removed from his room----but was once Mom and Dad's first bed when they married. I brought the matching bedside table they used. I brought the quilt that Grama had cross-stitched and quilted for me when I was 7 and used my whole childhood. Mom was touched to tears to walk in and see "her" old bed and her mom's handiwork surrounding her. It was like going home to Jamestown.

My brother Chris and I had a corner of items left in the upstairs apartment to comb through and when we went up to take those last few things out and lock the old doors, we both said how almost suffocating it felt in there. There was sadness living in the walls. When you looked into the bedroom, you felt Dad's pain and suffering. It became a place of isolation and grief for Mom (and really, for us all, as we provided the caregiving). Chris and I could not leave quickly enough and turn in the key.

For a 94-year-old to choose and make this move and deal with re-learning where things are in each drawer and cupboard and re-orient herself in the closets is cause for applause. She is meeting delightful women down on first floor.....many widows.....and she is loving sitting and looking at the trees and drinking in the sunshine. The place makes all of us simply smile. When you walk in, there is a new freedom, a new light and airy feeling in your soul. It is a new start.

                                                                         ***
I have my first PET scan this week since having radiation in September, trying and failing a new chemo drug, and being completely off all medical intervention for one month. I have no idea what is happening in my body. We will know the results on Friday. My faith is unchanged in healing. With every scan, I wait to hear the words, "No evidence of cancer." 

Maybe Friday.

Thursday, December 4, 2014

WHAT'S IN A NAME?

Joseph.

I wonder if any other Old Testament figure endured the personal anguish that he did.

The favorite son of Jacob, he was hated by his 10 jealous older brothers who conspired against him and sold him to slave traders, then lied to Jacob, saying that Joseph had been mauled by a stray animal.

Betrayed by his own brothers. Thrown into a pit and then sold as an animal would be. I can’t imagine the pain of that familial betrayal.

He was then sold again by those traders to Potiphar, an officer of the Pharaoh of Egypt. Joseph served well under Potiphar, but his master’s wife wrongly accused him of rape one day. A man of impeccable integrity, I cannot imagine how he coped with the pain of false accusation. On top of his personal angst, he was thrown into prison for the alleged crime.

Each time I read Joseph’s story, I am newly amazed at this man’s tenacity, his confidence in God’s providence over his life, and his boundless determination to see good evolve from evil.

His life ended well, as we know. The prison keeper befriended him and learned of Joseph’s divine ability to interpret dreams. After Joseph interpreted a dream for Pharaoh, he was elevated to a place of prominence and given governance over the land and crops of Egypt, eventually saving his entire extended family from starvation during 7 years of famine that he himself foresaw. 

Joseph’s struggles and burdens have shaped him. His pain has taught him lessons. How do we know this?

Baby names. 

In Genesis 41:51 we see that Joseph names his first son Manasseh, which means “God has made me forget all my troubles.” And then he has a second son and names him Ephraim, which means “God has made me fruitful in the land of my suffering.”

He forgot the pain and found meaning in it all. Wow.

So profound were those two lessons that Joseph wove them into the names of his first two children.

As I wallow in the land of uncertainty with cancer, wondering if it is still growing, being off all medical treatment, wondering what my real diagnosis is, wondering if I will have to endure more horrible side effects……. I am brought to my knees with thoughts of Joseph.

He teaches me that God will bring enough healing to me someday that I will forget all of the emotional and physical pain of the past 4 years, and he teaches me that God will bring something fruitful, something of value, from this vast and dark expanse called cancer.

On days when I have a hard time believing that, I only need to flip back to that 41st chapter of Genesis and take my cues from one whose adversity more than rivaled my own. Joseph pressed His soul into His Lord and trusted His sovereignty. He endured his pain. He put one foot in front of the other and kept moving two steps forward, one step back. He walked straight through several hells on earth before God showed His hand.

And then Joseph sees the larger picture. He sees how the path of his pain has brought a blessing to his family.

"What you meant for evil, God turned into good." (Gen 50:20)

Joseph’s finest words to his brothers. 

His verbal magnum opus.

His realization that beauty comes from ashes when you trust that the last chapter in a book of suffering and adversity will always be written by the One who makes the ending one of boundless worth.



Tuesday, December 2, 2014

GRATITUDE

So grateful for these two men in my life who love me deeply and encourage me and make me laugh and support me and pray with me and make my life so very rich!!

So grateful that next Thanksgiving there will be 4 of us in the picture, and that our beautiful daughter-in-law-to-be will be adding new sparkle and dimension to our lives!



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.