Love in a Box

I mentioned my Schipperke family on Facebook in my last post Wednesday July 28. This may be the most loving, selfless and caring bunch of people on the planet. It should also be noted that there are a couple of people in our "group" who don't have Schipperkes. One of the friends is a lovely young woman in California who has a precocious chihuahua who we had made an "honorary" Schipperke. We also got together and collected funds to help this precious lady and her husband get a Schip.

David's mom called today and said that Dad had gone to the post office and picked up a very large box addressed to me in care of my in-laws. Huh? She spelled the name and said the return address....and I knew it was from one of my Schipperke mom friends.

I was NOT feeling good today. Upset stomach, dizzy, etc.etc,... I just wasn't feeling well. We went over to Mom and Dad's house. I was astonished by the size of the box.

Opening this box and discovering its contents was one of the top 3 memorable times of my life. I have never personally experienced such an outpouring of love and support. Tears of joy started and flowed freely as I carefully examined each of the little treasures, thoughtfully chosen for me.... in a basket... in the box.

But there was more in the box. I removed the colorful tissue paper that basket had been on, and -----whoa----there was a quilt.

Not just any quilt. These amazing women had collaborated on this amazing quilt project. Each friend had provided one or more squares for the quilt. Some of the squares were photos of them and their dog(s), transferred to the cloth. Some were comments, encouraging thoughts. Some squares were decorative. One of the women took on the formidable task of sewing all the squares together and physically creating the quilt.

I was so stunned and overcome with emotion as I examined each square of the quilt. David filmed the whole box-opening process while Dad watched from the sofa and Mom was there with me on the floor. These precious women --from all over the USA, and the world--- had been plotting this---with David's knowlege since the time of my surgery.

Another example of God's perfect timing. Back in June when I had the pneumonectomy surgery, we were still talking about a CURE for the lung cancer....and probably also for the breast cancer cause it's so early. Shortly before the quilt arrived, new CT and PET scans showed that I have metastasis to the spleen and possibly the left scapula. These findings took me from a potentially "curable" stage IIIa to a Stage IV---where all we can really hope for is some kind of remission.

A lymph node is now lighting up in my left axilla (armpit) that had not lit up before. So...things had become more complicated since my surgery, and the prognosis much worse.

So, when the quilt arrived, I was still trying to get my head wrapped around that. The love and care that went into the making of that quilt just boggles my mind. I am so humbled that these friends care enough about me to do something so wonderful.

The quilt has a place of honor in our living room. It's hanging from special wooden clamps attached to the wall. I can easily remove it at any time---and just wrap myself up in it when I feel sick---or am feeling blue and need a boost.

I am so blessed to have so MANY people pulling for me. All my colleagues at work, my church family, my family, my husband, my Facebook family. I can just imagine everyone in my mind...around me, walking with me into the unknown. The Lord has blessed me with these companions for my journey. I pray that He will use this experience to bless them. They are walking with me -- as I follow Him---

"Where He leads me, I will follow...". We can enjoy the journey as we consider the joy of love and friendship, hope and faith.

Tarceva journey begins...

This post may be disturbing--just a warning up front. Tonight, I start taking Tarceva, the tyrosine-kinase inhibitor that we hope will get my metastatic lung cancer into remission. I'm praying that 1.)I can tolerate the side effects, 2.) it works, and 3.) they see a result soon....so the surgeon can go after my breast cancer.

I've given a lot of thought to my faith, my life and living and dying over the last few weeks. I've done a lot of soul searching in terms facing death within the next year --five years, maybe longer if I'm VERY lucky.

One guarantee that we all have in life is that we will one day die a physical death. How, when...not for us to know or decide. One "fear" I've always had was becoming old, infirm and having to go in a nursing home. Dementia. Alzheimers. This fear flies in the face of Scripture---where it states "Fear not", "Do not be afraid"....dozens of times in several different wordings.

So...the bottom line is again, trusting the Lord to meet my needs, and to give me experiences that will make me more into the person He wants me to be. Cancer is part of that plan. It's an in-my-face call to evaluate my life.

I am blessed to have so many wonderful people pulling for me and praying for me....dozens of them I have never met face to face. Some of them are in the midst of their own personal crisis---health or otherwise---but they still have reached out to me to offer words of love and encouragement. I've gotten Facebook posts of fellow Schipperke lovers that moved me to tears. The love of the Lord coming through His people...

Getting metastatic lung cancer and breast cancer at the same time is not what I had in mind for this time in my life. I had actually planned on returning to school for my doctorate. Frankly, pursuing a doctorate at this age would be narcissistic over-indulgence. Did I take my body for granted? I've always been active and healthy --- and now my physical abilities are greatly changed, reduced. It is with a new paradigm of my physical self that I approach this medical regimen.

I'm excited to attack this chapter of life. Yes--many things have changed and will continue to do so. Having cancer doesn't mean that I am going to die tomorrow. I have cancer...but I am NOT cancer. I live with cancer, but it isn't going to define who I am. The cancer cells hanging out in my body are no more ME than the cellulite on my legs.

I have been blessed with a wonderful husband and new life after years in a miserable, loveless marriage. In David I found someone who really understands what makes me tick, someone I love to do things with, go places with, talk with, pray with; I have a new family. I have been blessed with more in the last 3 years than I could ever have hoped for.

This is not just my journey, but also David's. He his a man of incredible strength and faith. He believes that the Lord is using this to do many things in our lives and in the lives of others. He believes he is the one meant to go through this with me. (Thank you Lord!) I asked the doctor if she thought I'd have a year left to live. I did NOT ask "How long have I got?". She's hopeful that I will be one of the people who go into remission. The breast cancer is a wild card. David and I have things to do!

I am left with the choice of how I will live day to day from here on out. I must look for joy and happiness every day. I must choose to be happy in spite of the changes. If I only have 13 or 60 months left to live, do I want to spend them depressed and miserable? Heck no!

I know that I will have boo-hoo moments, and depending on the side effects, may struggle. My life will never be what it was before. Period. The challenge is to find a new "normal" and live within that. I pray all the time that I get the lesson/message that the Lord wants me to. How can I / we use this for Him?

It's almost time to take the pill. "One hour before or two hours after eating." I join the ranks of several fellow Stage IV NSCLC patients taking Tarceva who I have "met" on the Inspire website support group. There are so many people there who generously share their experiences and encouragment with others who seek insight, reassurance and hope. I thank them.

Lord-- I would really rather not have to go through this --- but not my will, but Your will be done!

First dog: Yauni

Autumn 1967; I was eight. My mom decided that it was time to get a dog. She had a dog on her grandparent's farm as a child, and had had a Samoyed named "Snuffy" during the early 1950s when living in Wisconsin. My dad had also had dogs as a child: a Great Dane named "Baron" and a little terrier mix named "Max".

Mom had trained and showed Snuffy in obedience and confirmation. I believe he completed his CD-X and was working on his Utility Dog when died unexpectedly. Mom said she believed that a "difficult" neighbor poisoned him. Mom was pretty knowledgable about dogs and had been giving a lot of thought to what breed she wanted to get. Dad left all that up to her...he was just excited to have a dog again.

Mom and I looked through the AKC Dog Book and went to several dog shows trying to narrow down the list of possibilities. We looked at Shelties, Huskies, American Eskimos....etc. Mom was interested in a "northern" breed of dog, as they seem to have less "doggy odor".

We went to visit a breeder who had Norwegian Elkhounds. Bea Cox and her son Bill had been breeding and showing Elkhounds for years. Our visit that day to Hickory Hollow Kennels was to give us an opportunity to get to know Elkhounds. Bea did not have a litter at the time. She had bred her NE male "Buffy", and had just received her pick-of-the-litter puppy.

After visiting with Buffy for a few moments, I spotted a small, grey mass of fur in the grass...it was the POL puppy...a female. It was instant love. Long story short: we took that puppy home. She was a sleepy girl, so we named her Yauni, short for Yauna av Engelman.

My Grandma (mom's mom) was adament about not liking dogs. She was totally against us getting a dog. Thanksgiving Day 1967 Grandma and Grandpa came over for dinner. She took one look at Yauni, and it was love at first sight for her, too.

Yauni and I were inseperable. She slept in my room and tolerated being dressed up in whatever I could find. The summmer of 1968 I went to a 2 week residence Girl Scout camp, and I thought I would just die for missing my girl.

Mom and I took Yauni to obedience school and started showing her. We won several junior showmanship ribbons. Mom showed her in the obedience ring, but I often showed in the confirmation ring. She got her CD title, but we never finished her confirmation title.

We had some interesting neighbors who found it scandalous that I was out chasing Yauni with a small frying pan trying to collect a urine sample. They were traumatized, however when they saw me helping with the actual breeding process. It was all very matter-of-fact for me...and my mom was a nurse. I didn't hear the conversation, but I'm sure that my mom let the neighbors know there was nothing to be concerned about.

I'll never forget when Yauni had her puppies. What a wonderful experience for me! Mom and I trained her, showed her in confimation and obedience. I showed her in Junior Showmanship. One of the puppies was returned to us when the family had to move unexpectedly. So, Cato joined us in traininag and shows. It all was a wonderful learning experience for me.

Cato died in 1978. He was 10. I remember the evening before his abdominal surgery, he and I spent cuddling on the living room floor. He couldn't get comfortable. He knew, and I knew. The next day, I called Mom from the student union: they opened him up and cancer was everywhere in his abdomen. They went ahead and put him down. I wandered around campus crying; I had never lost a pet before. I was devastated. Remember, I was present when he was born.

Yauni died in 1982 while I was on the road with the band. We were in Jamestown, NY, hometown of Lucille Ball. Yauni was almost 15. I was getting ready to leave the hotel room and go downstairs to the bar when the phone rang. It was my Dad. He told me about Yauni's passing. Eleven years later, Daddy would make another phone call to tell me that my mom had passed.

It was very difficult for me to go on that night. Yauni had been my best friend for years and years....and I was and had been far away from her for a long time. I still have some of her fur that Mom clipped off her.

Our childhood pets teach us so much about life, love, loyalty, responsibility, illness, death...a microcosim of life experiences. Yauni Paws-- play happily at the Rainbow Bridge until I can join you and all our other 4-legged loved ones....

My meltdown: what Jack, Duke and David did

I had a meltdown yesterday (Sunday July 4th), that lasted almost the whole day. I'm not proud of it; most of the time I've been fine since this whole thing with the cancer started. Yesterday was a shining example of a 51 year-old woman transformed into a cranky 3 year-old having a temper tantrum. Stamp the foot..."I don't want to be sick!!!!My whole life is xxxxed up!I don't want to be sick!!!" ....and so on.

Mixture of fatigue, not feeling well, menopause with a little depression thrown in? I make no excuses. It is somewhat shameful considering my great faith and the great support I've received from every corner of my life.

Anyone who has lived intimately with dogs understands the special relationship and unique communication that occurs between human and canine. What Jack and Duke did yesterday was extraordinary...and in 43 years of living with dogs, was something I had never experienced.

I was upset, in the shower crying. Got out, sat on the stool at the vanity. Sobbing with one lung is different than sobbing with two lungs. Sounds odd, but you'll have to take my word for it. Breathing effectively with one lung while sobbing is impossible.

The sounds I was making as I tried to get a breath were...disturbing, even to me, the sobber...a gasping, honking sort of sound. I was afraid I would pass out. I felt Duke's cold nose nudge my right arm and hip. Jack, standing beside him, barked sharply at me, once, twice, three times. He jumped and nipped firmly at my right arm, then barked again. Duke kept his head on my right thigh.

My utter astonishment at the dog's actions short circuited my sobbing jag. I was able to catch my breath and slow it down. As my breathing changed, Jack sat down, ears up, watching me intently, expectantly. "I'm OK boys, Mommy's OK. It's OK." The ears went back, and he jumped up to place his front feet on my right leg, rear end wagging. Duke lifted his head and gave me a sloppy, wet Pointer kiss.

Once I was "fine", their whole demeanor changed from one of concern and worry back to "happy as usual" morning ritual mode. This is not a dramatic case of saving someone's life, but Jack and Duke knew things weren't right with me, and they intervened. Wow.

My blessed husband had the most incredible insight later that afternoon. He realized that I had "stuff" that had to come out, and that I needed someone to push against to facilitate getting the job done. He sensed my anger. He knew that he was the one, the only one with the knowledge of me and my situation who had the authority and position to do it.

Anger is never pretty. It's all about not getting what we want, getting our way. I DO believe that the Lord is in charge, and that he has and will always work all things together for my good. But it's not about me getting my way...it's about His will for my life and dying to self. But as Christ prayed in the Garden of Gethsemene on the night he was betrayed, he said " My Father, if it is possible, take this cup from me....but not my will, but Yours be done." I am not angry with God, if that makes any sense.

I'm ashamed of my meltdown. I could not steer it. So I can only apologize to David, and vow to learn from it. We are emotional creatures, and emotion and intellect will get out of balance. I'm grieving, period. My prayer is that as I continue to grieve and come to terms with the physical changes associated with my illness, that I will do so graciously.

A courageous friend helps me

My best friend has MS. She was diagnosed in 1999 when her hands stopped working properly. This diagnosis presented problems, because she was a hairdresser: had her own chic salon, was an educator for several product lines, all around tops in her field. Long story short: she had to close her salon, move in with her sister and try to create a new life.

That was a very difficult time for her, and the subsequent years were
(are) very challenging. Loss of function, loss of endurance, loss of mobility, loss of dexterity, waves of severe fatigue...the symptom list is endless and ever changing. MS is a moving target... it changes its attack over time. Can you imagine the depression of coping with all those changes? She struggled, but never, ever lost her sense of humor.

As her friend, I did what I could. We eventually referred to her disabled parking permit as the "princess parking permit": we could park closer to the stores. Her wheelchair provided myriad opportunities to hang shopping bags when the shopping trips got serious. She went back for vocational training and started her own travel agency specializing in travel for clients with mobility issues. She is an expert on those motorized carts in the grocery stores, and navigates crowded stores with confidence. Her struggle and resilience were amazing and humbling to see.

Fast forward 11 years. Tables turn. I am the one who's struggling now. She's the one who understands what it means to have your life turn on a dime and change into something that you don't recognize. She knows what is means to be strong, healthy and active -- only to have that disappear.

Kristi is teaching me that it's OK to be sick, that it's OK that I'm not the strong one now. She understands what it's like to drive a scooter in the store -- as a relatively young person who normally wouldn't need one--- and have people look at you with pity. To feel you're pathetic in the eyes of the world. She understands what it's like to appear healthy and normal, but be so desperately fatigued, you don't know if you can go on one more minute...

Energy conservation. This is something that I have spoken about in generalities with my own patients for years. Now it is the reality for me. Kristi has become an expert in task analysis for this purpose. Living it changes everything.

What a gift that I have this wonderful friend in my life -- who I've known for 30 years -- who is willing walk through this with me, drawing on her own experiences to offer hope and encouragement to me!

I've only been down for about a month. I've lost a lung, and still have chemo ahead of me... then I have a breast surgery and chemo coming. Who knows what I'll have left after all this in terms of functionality? My body does not define who I am. Losing a lung hasn't changed who I am or what I believe in. If losing a breast is going to save my life, so be it. I am not my breasts.

The Lord has a purpose and a lesson in all this for me... I must keep my head and heart open for it.