A day at the spa?

Lydia taught me many things in her cancer journey, and it only seems proper that as I travel a similar path, I describe it here rather than starting a new blog. I don't think she would mind.

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Chemo is not a day at the spa...or is it?

I just completed chemotherapy treatment 6 out of 8, and so feel authorized to call myself somewhat of a Chemo Ninja. Let me tell you: it's not as bad as it sounds!

Typical chemo day:

Rise early. It will be a long day. 

Take a nice warm shower. No need to shampoo or shave your legs. You have no hair. Also no need to pluck your non-existent eyebrows! What a time-saver!

So skip the hair dryer and curling iron. I also skip the make up (including painting on eyebrows and eyelashes) and jewelry, except for my wedding ring. I love my Charlie that much!

Now, the most important part: put on your warm, fluffy robe and go...

Curl up in your special place with your Bible and devotional reading and a cuppa (hot coffee or tea). Thank the Lord for His tender mercies.

Get dressed. I know that people go shopping in their pajamas and puffy blue house slippers, but you'll see none of that at the clinic, so dress accordingly.

Key fashion words: Comfort and warmth

Comfort: I prefer to wear a skirt (less binding and remember, I didn't even have to shave my legs) and a button-up shirt with a cardigan (makes it easy to get to my port).

Warmth: Chemo makes you cold. You must cover your beautiful, bald head or else freeze. I always wear my wig, though it does not really fall into the "comfort" category. (At home, I wear Lydia's pink tobaggon hat when I feel cold.) Bring warm, cozy socks! I stick them in my bag and put them on just before chemo starts.

Speaking of my bag: you must pack! I have my iPod filled with books, sermons, pictures of family and friends (mostly Katherine Ruth, the most beautiful grandchild ever) and ok, a bit of John Denver and the Bee Gees. I carry print copies, just in case technology lets me down. I have crosswords and pens of all different colors. Lip gloss. Tissues. Journal. A bit of cross stitch. I used to pack snacks, but read on!

Upon arrival,

I am greeted by the most loving, caring group of nurses and caretakers. I get hugs and smiles. They call me by name and ask about my grand baby. I have come to know them by name. I have come to love them and thank God for them. Few can do what they do, day after day. I sit and wait with my other new friends, other patients waiting for their treatment, their talk with the doctor, their test results. My visits to the clinic are frequent, and as time goes by, I learn their names, their situations, and my prayer list grows. We do not realize our blessings till we sit in such a room, either as a patient or as a family member. It is the wonderful side-effect of cancer: the realization and illumination of the just how greatly we are blessed, even now!

My name is called (Kay, not Donna!) and I go to the treatment room. I am quickly and fairly painlessly hooked up, thanks to my port-o-cath (thank you Dr. Mason for doing such a fine job--I hear frequent complaints of badly done ports). This port is better than the ones on my computers! One stick and I am ready to go: blood work, chemo, other nice medicines that make me warm and drowsy,  nutritional fluids, steroids, the works! It creeped me out at first, laying there under my skin beneath my front shoulder--but we have since made peace.

Then I choose a recliner where I will spend most of the day. There are four at my clinic. Sometimes I am there all alone and get to chose my favorite one (in the corner with a nice view out the windows).
Sometimes there are 4 of us, and I pray for each one.

I am offered a soft, warm blanket and a variety of snacks (mostly salty crackers, a chemo favorite, but also cookies and mints) and water or soda (extra points if you choose water, but I always go for Coke Zero, regardless). I quietly greet those seated with me. Mayberry RFD or Bonanza is on the TV, and I watch it for a while. Relax, sleep, read, pray. Snuggle up and start again. Mani and pedi not included. I am not getting my winter-dried feet smoothed and creamed. I am not having my craggy cuticles trimmed and my nails painted bright red. I am getting cancer cells zapped. I think of Pac-man  (I was VERY good at Pac-man) and smile to myself. I think of my Lord, sitting there with me, loving me as He carries me safely through this storm, and I praise and thank Him for His perfect will.

Better than any spa.

PS: It is a bit downhill from here for the next few days :-)

Gift

It comes over me without warning; I feel fine and then, suddenly, I am engulfed in sorrow and loneliness so great that I do not know how I will be able to bear up under it for another moment. It lasts, sometimes several minutes, sometimes several hours, and then it subsides. And I know, and accept, almost as a gift, that this will be how it is for the rest of my life. Why a gift? Because it is all part of the great joy of loving you and being loved by you. And for the time being, it is what I have left of you, my sweetest girl.

Dancing

You have turned for me my mourning into dancing: You have put off my sackcloth and clothed me with gladness, to the end that my glory may sing praise to You and not be silent. Oh Lord, my God, I will give thanks to you forever. Psalm 30.11-12 . I begin to see glimpses of this.

Heard on ER tonight

When your parent dies, you become an orphan.
When your spouse dies, you become a widow.
But, when your child dies...there is no word for that.

Her story

Lydia, our precious daughter, died on December 10, 2007, from glioblastoma, the most rapid and lethal type of brain cancer. It occurs to me that I have not told the story of our last years together, of her sickness. I wrote in a journal for years, but during Lydia's illness, and since her death, I have been without words; utterly unable to comprehend and express the mixture of great sorrow and pure joy that filled those days. It has been a year now. We have endured all the "first things," all the anniversaries that are so hard to face: her birthday, the holidays, the day of her death, the day of her burial. Still, I am wordless. I am disoriented, as though the world has changed so drastically that I cannot find my balance in this new, strange place. How can I bear the pain of this loss? Can I share her story with you? It is briefer than it should be, but as time goes by, maybe I will be able to add words (as they come to me) so that it makes more sense.

In the Fall of 2003, Lydia was attending the University of Texas (about 500 miles away from home), had a serious boyfriend, and all seemed perfect--except she was having terrible headaches. The doctors were treating her for allergies, but their treatments only seemed to aggravate the headaches. In the spring of 2004, a new doctor checked her and noticed her eyesight was quite poor (she had always had her Dad's perfect vision) and sent her to an opthamologist. This opthamolgist could see a tumor behind her right eye and sent her right away for a MRI. Lydia called us from a hospital bed to tell us. Her dad and I drove the 500 miles through a terrible, stormy night to be with her when she had surgery the very next morning. The tumor turned out to be malignant, a grade 1-2 astrocytoma. We were devastated. Before closing her after surgery, the surgeon lined the area with glial wafers. The tumor, the size of a tangerine, had been pressing on her optic nerves for who knows how long. She had lost most of her vision, and though the surgeon felt the vision would return, it never did. Her blindness was so heartbreaking. She had always been a very independent person, but moved back home with us to recover. The next two years went well. She went to rehab ("This rehab is not about my cocaine habit!" she always joked), learned to get around with a "seeing" cane. She did not take any further chemo or radiation as the tumor was low grade and showed no signs of returning. Sadly, and against his wishes, Lydia broke up with her boyfriend a few months after being home.

In July 2006, the tumor returned with a vengeance, this time, glioblastoma, a very agressive, deadly cancer. Lydia again had brain surgery and the surgeon removed as much of the tumor as possible. She began radiation treatments and temodar (chemotherapy). She lost all of her beautiful hair, but never her sweet spirit. She was always so bright and funny.

She had a good year. In July 2007, she attended her brother, Chuck's wedding in New Orleans and was strong and beautiful. In October of 2007, we had planned a trip, at her request, to visit the Grand Canyon. In September 2007, though, we began to notice changes in her: fatigue, weakness, absentmindedness. It happened very quickly. We canceled the Grand Canyon trip. I am still too heartbroken to go into much detail about this part of the journey. Daily she declined, less and less able to sit up or walk or eat or do anything without help. Still, she never lost her sweet spirit. She said to me once on the way from a bathroom trip, as I had my arms wrapped around her, holding her steady from behind, "Mom, thank you for taking care of me. I have really been a handful, haven't I?" I laughed and told her she had been a handful since the day she was born! Tears poured from my eyes.

She was put on a more intense chemotherapy, avastin and irinotecan, but continued to decline. By Thanksgiving, we knew what we could do for her was not enough anymore. We could not keep her fed and hydrated enough. She could not eat or drink. I know now that her bodily functions were shutting down one by one. After taking her to the hospital, she began having seizures. She only stayed there for a few days. On December 1, 2007, she was moved to Sanctuary Hospice House in Tupelo, Mississippi. She was treated with the greatest love and respect there. She went to be with the Lord in the early morning hours of December 10, 2007. Her dad, her 2 older brothers, Chuck and Jason, and I were with her when she died.

Sweet Lydia, I know you can see the Grand Canyon from where you are, really SEE it. I love you and miss you so much.

CHRISTmas

In recent years, Christmas has became just another chore to me. Trimming the tree, putting up and taking down the decorations, cooking, shopping, eating too much and spending too much; these things became just another long to-do list on top of the long list I already had. I dreaded it all, complained the whole month long, breathed a sigh of relief when it was all over. Last year everything changed.

Last December we lost our Lydia, and the world stood still.

All the busyness and hurry and stress of the season just fell away. We knew: Christmas would never be the same again.

This Christmas, I gave myself a gift: the permission to redefine Christmas in my life; to make it what it was meant to be. I had lost the joy, the quietness, the meditative spirit of the season. I had lost the Christ in Christmas. Lydia now lives with Jesus; what better time to remember in my heart why we celebrate.

For unto us a Child is born, Unto us a Son is given; And the government will be upon His shoulder. And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace.

Blessed and happy

Lydia, yesterday I visited your grave, and for the first time when doing so, I smiled and did not cry. It was a beautiful fall day. Fall has such sad memories for me: my mother dying, your sickness last year, and yet it is my favorite time of year. I left after Sunday School yesterday to walk to the cemetery and place flowers by your beautiful "Canadian Rose" tombstone. I tidied up around your area and around your grandparents graves, then I just sat with you a while. It was quiet and peaceful and my love for you flowed warmly and happily through me. How dear you are to me. I thank God for you, and though you were not here on earth long enough to suit me, I am honored and blessed and happy for the time that you were here. You were good for me. You changed me. Before leaving your grave, I took the small metal gravestone marker placed there the day you were buried, and I took it home and put it at the foot of your magnolia tree. And I did not cry.