Where do you start when something like this happens? You start by remembering and recording tender mercies that remind you that God has been there all along. The day of my first surgery we were in the pre-op room and three different nurses had tried and not succeeded in putting in an IV line. They gave up and let the surgeon put it in when I was under anesthesia and it wouldn't hurt, or at least I wouldn't feel it.
When they left, Mike took my hand to comfort me and suddenly there was a soft strain of music floating through the room. Paul Cardall's "Remember Our Love" (click here to listen) inexplicably began playing from his backpack sitting untouched on the floor. It has become our theme song and never fails to pull me back to feeling faith and peace about everything. We planned a trip then and finding it very therapeutic to retreat to regroup, have continued this practice each time we receive disappointing news.
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| RollerCoaster or Tower of Terror? |
When I expressed what a four year roller coaster this journey has been my sweet husband said, "Well, at least it hasn't been a sudden fall and we have had some hopeful ups as well as disappointing downs. I feel very blessed to have been given really good time since your first diagnosis. I don't know any stage four melanoma patients that have lived this long. I think we need to list the "Facts" from the appointment before we start speculating or go off on tangents." So he listed and I made notes:
Facts
The melanoma is growing in multiple places now (I added that it is not threatening any body systems at this time but he didn't consider that a 'fact' because we only scanned my torso and we don't know what is happening in my brain.)
There is no way to stop the melanoma. Side effects of Pembro are too severe. Pembro was good while it lasted but it's usefulness has ended. It will take a significant time to get over the side effects of Pembro.
Over the next year chemotherapy could possibly reduce some suffering but will not extend life expectancy. Chemotherapy has side effects that cause suffering and decreases quality of life. The benefits of chemotherapy do not appear to outweigh the side effects.
Quality of life right now is good and a decision to not proceed with chemotherapy was made today. Recommendations from the doctors were to "live it up" and enjoy the summer, which we plan to do, and we will scan again in August.
This time, as in the two previous bad news appointments, we traveled to Oregon. We headed off that weekend without a sure plan of exactly where we were going but of course, God guided us to a beach house on the Oregon coast where the peaceful waves soothed our raw nerves and restored the peace we needed. My husband is very calm and reassuring, in spite of his own anguish at losing me to such an insidious terminal illness. Being a physician and yet not able to do one thing to prevent this cancer from taking over my body has been devastating for him.
Someone listening to our conversations would be surprised at our morbid humor but it helps. He started listing all the things I won't have to deal with and with each one we laughed harder and harder, releasing all the pent up stress and anxiety.
"Just think babe, you won't ever get old or wrinkled, er.. more wrinkles! ... You don't need to wear sunscreen! ... You'll never have another kind of cancer! You were so worried about a slow death from Multiple Sclerosis complications and now you don't have to worry about that! ... No more fear of flying! You'll never be a widow! You'll never have Alzheimers!
No more Mammograms or Colonoscopies
Joint replacements just aren't in your future.
Neither are Cataracts or
Macular Degeneration
Bunions
Toe fungus
...
You don't have to worry about the triple H:
Hyperactive Bladder
Hearing Aids
Heart Attacks
...
You'll never have the four Ds: diabetes, dementia, dentures and depends!
Then I added "You mean the five Ds, you forgot depilatories!"
Then he said, "What are depilatories?" (He actually said "delipatories?" :)
And last of all.... you won't have to worry about the Apocalypse... or another Election, whichever comes first.
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| Photo Credits: Hannah Beus Van Bibber |
He is perfect for me. I don't know what I would do without him. Because I don't know if I'll be here on our 40th anniversary this December, I'm going to just take a minute to sing his praises now.
I have always been a very fortunate woman and a most blessed wife. He completes me in every way and I love him with all my heart. A blessing I received at 16 years of age was fulfilled when I met and married a "choice young man who would want to care for me all the days of my life." He has demonstrated for 39 and a half years that he WANTS to take care of me. Anything I've ever been interested in or wanted to accomplish he has tried to facilitate. He has always expressed love and gratitude for me and valued my contribution to our family. He has cherished our children and provided everything we could ever need and more. Lately, I've been a very expensive liability to him but he's never once complained, just repeatedly said, "As long as you're alive, I'm happy." Now that our mortal life together will come to an end all too soon, knowing that we will be together eternally means everything.
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| Babies - just the beginning... |
Mike brought these "Alive" vitamins home and asked me to start taking them with my daily handful, haha! So completely focused on extending my life. Love him!
Walking on the soft sand in the shallow waves, feeling led and watched over by God in every step of this cancer journey was comforting. I loved feeling the earthly pleasures of the wind on my face and the sand between my toes. I don't know what comes next but I know that God will "manage the messiness" and as my good friend, Karen Talbot, says, "I will face it with angels on every side.
What could be better than that?"
