GOOD NEWS! Finally!

Health care professionals can be very difficult patients. For my part, I have heard so many stories about the sleep aid zolpidem, I had refused a prescription for it several times. Sleep walking, sleep eating, sleep sexing, sleep driving-- you name it, I wanted no part of any drug that has those kinds of side effects.

I admitted to my breast medical oncologist on Tuesday that during my frequent bouts of insomnia (nightly!)I would partake of my "Insomnia Jelly Bellys". He laughed and rolled his eyes. Yes, fatigue is my biggest issue. Well, I'm writing you a script for this, and you're going to try it. Yes, sir.

I have slept every night since I started taking it. No weird side effects, no weird dreams, just sleep. It's like a miracle. Now that I'm sleeping, I'm getting a better idea of what kind of energy I really have contending with just the cancer, the meds and one lonely lung.

I'm so excited about being able to sleep it's really been a boost to my outlook. Funny what we take for granted.

Remember how I bragged about the long and curly eyelashes I've gotten while on the Tarceva? I spoke too soon. The lashes get TOO curly...then they break off or fall out. Right now, I've got a long curly set on the right, and a short, kinda curly set on the left. The left looked almost bald for a few days.

Then there are the eyebrows. I have NEVER had eyebrows, neither in quantity nor in color. That has also changed. I'm getting old man eyebrows: darker, longer, and unruly...sticking out in all directions. I've had to resort to using an eyebrow brush and eyebrow gel to tame them. Sign me up for a weekly wax.

I'm terrified that I'm going to start to grow hair out of my ears next. It's very hard to see that yourself....am I going to have to ask my hubby to check my ears for hair? Eeeww!
Sorry fellas, but ear hair is a man thing, not a lady thing.

So, no more excuses for Jelly Belly beans... just have to rein that one in. Can't wait to tell Dr S that I'm sleeping. 'Round Midnight belongs to Monk again.

What you don't see

NOTE: not whining, but to say no one can tell what goes on in the body, mind and spirit of another. This is a continuation of the thoughts in "Everyday living".
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Skin so tight it hurts,
Lotion eases the tight wrinkles snd makeup almost hides the acne.
Blood. From where? The inside edges of my nostrils.
Bleeding.
My skin burns everywhere.
Red bumps and rash are coming everywhere.
It's rough like sandpaper: no lotion is enough.
It itches and itches.
I can't reach my back.
You'd never know if I didn't tell you.
The medicine that will lengthen my life has turned my skin to sandpaper.
I am alone
In this skin.

I awake from a decent night's sleep (unusual).
Aching muscles, aching joints.
Getting out of bed is like trying to swim through pudding.
Before my feet hit the floor, I remember. I have cancer that can't be cured.
Then the cough starts.

Why the cough? Reflux, anatomical changes, who knows? Who cares?
Typhoid Mary: out trying to shop and the damned coughing comes again.
Talking? Try it with vocal folds that have been beaten into what surely must be shreds.....
Coughing that causes the whole body to shudder and shake.
Coughing that wears a body out...only adding to the ever present fatigue...
Oh, Lord sometimes I feel so alone
With this cough and no voice.

I am always tired. Always. No amount of sleep fixes it.
How can anyone who looks so good be so tired? Nahhhhh....
You don't walk in my shoes, so you don't know what tired really is.

Is it any wonder that there are times when I am just sick and tired of being sick and tired?

Lord, I know you're there and you're working in my life.
I believe that all things work together for my good~~
And that I must keep my focus on you.

The psalmist writes that crying and sorrow will last for the night,
And joy comes in the morning.
Hold me tight as I close my eyes and take one step at a time,
And be ready to hold me up when I can't take one more step...

Return to "everyday living"...

The sense of urgency has passed. The shock of being diagnosed with two primary cancers has worn off. I've told the story so many times, I'm numb to it. I'm so used to it, I sometimes forget how shocking my story really is to people hearing it for the first time. In German I would call this "Alltag": everyday living.

I am living with my cancer, or some reasonable facsimile thereof. "Living" is different. There are medications to be taken at certain times on an empty or full stomach, depending. There is the horrifically
dry skin that requires repeated applications of heavy duty lotions.Parts of my body are covered with a hard, itchy rash. Even my nostrils are dry. My hair is fragile...but has become curly. My eyelashes are long and curly, thanks to the Tarceva. So...it gave me acne, the rash, the dry skin, but my eyelashes could get me a gig with Maybelline. I won't go into detail about the quantity of Immodium I ingest on a daily basis.

People say I look "good". I do. There are no outward, blatently obvious changes...short thin hair is nothing new for me. If they hang around with me for a while, they'd hear the wheezy sound of my breathing, my shortness of breath and the constant coughing. They'd hear the hoarsness of my voice caused by the coughing. They might see me steady myself during a dizzy spell. They'd see me looking for a place to sit! I try to conserve my energy for important things. Doing simple things like laundry or unloading the dishwasher are causes for needing to rest and catch my breath.

Yes...it's much better than this summer.What a long way I've come since my surgery...even with the side effects of the new medications...the post-op period is almost like a bad dream at this point. I had the pneumonectomy on June 7th. What I remember most about this summmer is the HEAT. It was mostly in the 90s with very high humidity. Most days I was stuck inside the house in the air conditioning. Taking the dogs out during the day was a scary ordeal. Cell phone in pocket, I'd take them out to the island of grass near the kitchen door for the fastest "business" on record. The dogs didn't like the heat either; they didn't waste any time getting back into the A/C..

During that time I was also taking a lot of pain medications. It's amazing I was functional at all.

Then there are the nights.....insomnia. Insomnia and itching. Insomnia caused by itching....with or without cough. Tonight--I write this not to whine, but to document...to put the night into words so that people might understand.
Today I was tired. Bone tired. I had to force myself to get up, move around, take a shower. The shower was a must because I need the Nioxin stuff for my hair, and I need to exfoliate my skin so that the moisturizers are effective. I use a mild scrub, then go over it again with a super duper moisturizing Dove body wash.

The shower has worn me out. I go to the vanity stool and sit...pondering the disarray on the counter before me. More moisturizer, then sunscreen. No problem; my skin is so dry the sunscreen doesn't make my skin gooey.

I survey my facial skin in the 5x magnification lighted mirror.Since being on the Tarceva and using extra, super duty moisturizers, the wrinkles are greatly diminished. This would be a cause for huge excitement, except for that the Tarceva has also caused three spots of true acne (which I never had as a kid), with a sprinkling of whiteheads for good measure. I believe the correct term is "zits". At the ripe old age of 51 I have produced a bumper crop of zits. Surely there's some kind of award for that!

By the time I've got the rapidly thinning, increasingly curly hair dry, makup on----I am exhausted. I still have to get dressed. By the time I emerge from the bedroom I'm ready for bed....and on days like today, I wonder how I can go on at all.

During this whole time, I have been coughing. If you've read my other posts, you know that this cough is deep, strong...almost violent. It's incapacitating. Talking to someone is incredibly difficult. Practicing the harp or piano--interrupted. There are two significant sequelae: I am hoarse, which also interferes with communication. Second, my chest and abdominal muscles hurt from coughing. The area under my left front ribs which is numb/burning/aching as a result of nerve damage from my pneumonectomy, seems to be especially irritated by the cough.

Finally, the cough just wears me out. On top of everything else, the cough brought me right to the edge of despair today.I felt like plopping myself down in the middle of the aisle at Target and crying.Not one more step, not one more breath.

After this terrible day of exhaustion, you'd think I'd sleep like a baby. No such luck. In spite of the moisturizers, I'm itching. In spite of the Nioxin, my scalp is itching and crawling. My whole body feels like one big itchy mess. At the moment, the cough is there, but less because of the narcotics I took for the side pain. The narcs don't help me to sleep; the itching is too severe.

Benadryl interacts with some of the drugs I'm taking, so that's out as an option to help. So, I got out of bed, came to the couch and computer, armed with my "insomnia" Jelly Bellys to check on Facebook and write here. One by one I pick the jelly beans out of the crystal jelly jar till finally, the jar is empty.

I return to bed relieved to know that it really doesn't matter if I'm exhausted in the morning...no patients to see, nowhere to go....I don't have to function at a high level.

When you are in line at the grocery and the person in line in front of you seems slow, it might be me. Wherever you find yourself among people, remember that their fears, illnesses and struggles may not be visible on the outside.

This is what I love about Christ...love people. Period. Whatever your religion or what your beliefs are, it's never wrong to show grace and kindness to others. I have experienced this so often and it's helped me uncountable times.

So...it goes on.

Three o'clock in the morning....

Coming out of sleep, I open one eye. I am assaulted by the green display of the bedside alarm clock. Three AM. A thought is trying to come to the surface...why is 3AM significant? What? Oh, yes. I should get up and take my Tarceva tablet. Next thought: I just woke up, so I've actually been asleep! Wow!

I ease myself out of the bed, night-vision straining to detect any of three dogs that might be underfoot. There is some light coming in through the blinds. I see that Boo, our 8 year old Schipperke, has left his bed and is laying on his side right in my path. I pad along carefully, so as not to disturb him. Duke, 9 year old GSP is still curled up in his bed, vocalizing ever so softly in his dreams of finding birds. Jack, 4 year old Schipperke, sound asleep in the ball bed. My husband David did not stir when I got out of bed.

I reach the vanity and tap on the lighted mirror. The Tarceva bottle is right there on the counter next to the water glass. My hand closes around the medication bottle and for a moment, I am keenly aware of what it is in my hand. A month's worth of Tarceva costs about $5,000 (yes, five thousand dollars). I am blessed to have excellent insurance: my co-pay: $10. I say a quiet prayer of thanks for that. The cost of the tablet in my hand is a day's pay for a lot of people. This expensive drug is working for me, though. It cost them millions and millions to develop it. I'm so glad they did. Another quiet prayer for the researchers who worked for years until they had a viable drug.

The cold water tastes good. My meds make my mouth dry. I notice how dry the skin on my legs and abdomen feels. My scalp isn't tingling so badly tonight. That keeps me awake quite often. Tarceva side effects. I'm grateful and mindful of living in a time, place and situation that a treatment like this is available to me. Another silent prayer of thanks. I set the glass down on the vanity as quietly as possible and carefully make my way back to bed. The drug is once again in my body, targeting the lung cancer cells wherever they may be. The drug is giving me more time...more "healthy" time, I hope.

I carefully slip back into bed. Boo and Jack didn't move. Duke has settled down, his nocturnal hunt completed. Sleep does not come: instead I consider what it means to my life to have access to this kind of care for this kind of illness. I need to honor this. I look at the clock again; it's nearly 4AM. I trust that the Lord can use cracked pots and broken bodies in His work. I pray my gratitude, thankfulness and at some point fall asleep.....because...

I feel a cold nose pushing on my arm. The mouth belonging to that nose bites down on the sheet and blanket, and with a hard tug, pulls the bed clothes off of me. David is not there. He got up very early. I'm still trying to fend off Jack, when Boo joins in on the bed, voicing his impatience with me with his rough, peculiar bark. Duke shakes himself, his long ears slapping together and on his head with loud smacks.

I struggle out of bed and walk over the retrieve my robe off the hook by the vanity. My eyes come to rest on the Tarceva bottle. I smile slightly, and with another small prayer of gratitude, allow my dogs to herd me out of the bedroom and into my day....

What next? Coming to grips with me as I am...

All in all I think I've done a pretty good job of coping with all the huge changes that have come into my life since April. I am, in many ways, a far different person now than I was then. The emotional and spiritual changes- all positive. The physical changes I am still dealing with.

This next section sounds like I'm whining. Maybe I am. I know there are people with far greater physical infirmities than I have...but I am coping with the hand I've been dealt. No, the Lord is not punishing me. I'm being pushed to change and to grow. I'm supposed to learn from all this. I know I have, but it has not and is not easy.

I'm not the first or only person around who suffers from fatigue; this is an age old problem with many causes. Not surprising in someone who isn't sleeping well.

I'll get it in my head to do something, and try to do it. I tried to do some weeding today. Sounds simple enough. Bending over causes bad reflux problems because of the way my heart, trachea and esophagus have shifted to the left since my surgery. It doesn't take long till I'm out of breath and just resting. The weeds don't care about my heavy breathing, or my coughing. I could do very little, even sitting on a rug scooting along. Simple tasks like laundry must be done in shifts. Do some, rest. Repeat. We've hired a lady to help with the big housecleaning because I just can't do it.

I would love to quit coughing. Not only has it toasted my voice, but it's exhauting. It wears me out. We're not talking about a little ladylike cough, I mean like I'm coughing up my toes. It's embarassing. It has made speaking incredibly difficult and talking on the phone almost impossible. It's a vicious cycle: coughing makes it hard to speak and speaking makes the cough worse. Not a good thing in a medical clinic. It's also made playing the harp in public impossible.

The shortness of breath can be significant. I frequently am very dizzy when I stand up.
I haven't even touched on the side effects of the medications, which are a delightful trip through goober-land on on their own.

Some days I feel like I'm just sitting here using up oxygen. I spent untold hours of study and devotion and the majority of my inheritance on my master's degree / Adult Nurse Practitioner. I've done an extra year's study in hepatology. Now--I'm unable to use that training. I want so desperately to go back to work, but do I have the stamina--emotional and physical? Will I get my voice back / cough control enough to make it possible?

Dear Lord,
You have given me everything and in such abundance, including the means to help people medically. There are physical issues that are preventing me from continuing that, and I'm feeling useless. Heal me enough Father, so that I may continue to serve You, or show me how I should otherwise serve. I don't want to miss your message or plan. I humbly ask this in the name of your precious Son Jesus...Amen

Good news! Tarceva is working! Sharing my story...

This post comes a bit late. I had my follow up CT on 9/20, and shortly after my scan, David and I took off to a cabin in Coshocton County near Roscoe Village. Our getaway had a dual purpose: to prepare ourselves for whatever the result of the scan might be, and also to celebrate our third wedding anniversary on September 22.

When the phone rang on Wednsday morning (coincidentally 9/22) at 7:30AM, we both knew it would be about the scan. My precious CNP colleague working with the medical oncologist called to tell us that the mass in my spleen had decreased in diameter from 3.8cm to 2.7cm. This reflects about a 50% decrease in mass, which is extraordinary.

When I hung up, there was gratefulness and praise to God, but it was not a gleeful kind of happiness. Both of us were prepared for bad news, perhaps I more than David. The good news was tempered with the knowledge that the Tarceva is working --- for now. It is not and never will be a cure; we are buying time.

Time~~time to live, to love my husband and my family, to serve God, to try to make a difference somewhere. Time~~not as I was before: strong, healthy and confident, but changed. Vulnerable, compromised. Not taken out of service, but the nature of my service and ability to serve has changed. I can no longer live my life 500 miles per hour with my hair on fire, consumed by my work, my patients, my pet projects.

Yesterday the medical oncologist told me that among patients on Tarceva, the average time until evidence of disease progression is about 12 months. I will have a CT scan of chest and abdomen about every 2 to 3 months. PET, bone and brain scans are not recommended for serial follow up. Those would be done if I become symptomatic. He has patients who have been on Tarceva for several years...I hope to be able to count myself among them.

I was honored to be asked by my pulmonologist (who originally diagnosed me)to speak to the second year medical students, both as as a patient, but also as a medical professional. Today, we presented my case to about 70 students. They were very attentive, and I was able to press home some points near and dear to me.

First: healthy non-smoker with chronic post-nasal drip / cough. At what point do you suspect cancer? Second: appearances don't tell the whole story. I am a perfect example of someone who looks good, but who is very ill and with substantial decrease in function. Third: level with your patients about your differential diagnosis, even if --especially if--- you don't know for sure. Explain your plan to get answers- tests, referrals, etc. Having a plan in place to get answers is comforting when that is all there is.

The students asked wonderful questions. I gave my contact information to one student who will get it to the group. I hope that I have put a face on lung cancer...that they might follow if they wish to do so.

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!