Cancer is spreading....still walking

I swore I was going to write more regularly, and I haven't done this. Not to make excuses, but I honestly haven't felt well enough.

Earlier this year, I had a bad reaction to the carboplatin. The Taxol caused severe neuropathies in my fingers and feet, which have improved only a little bit. I still have difficulties fastening buttons, the dogs leashes, etc. The problems with Taxol led them to change me to an oral medication called Xeloda. This regimen was 4 big pills twice a day with food.

The Xeloda has its own set of special side effects: severe fatigue, diarrhea and nausea,for starters. Most fun has been "hand-foot" symdrome, which has caused fissures in my fingertips, rash and itchy skin, much worse than the Tarceva alone(lung CA med). So between the nerve damage which has left hands and feet numb to the middle foot/haned, and the deeply cracked, dry skin, I can no longer play the harp.

Not being able to play the harp is the worst loss of all. I started playing harp when I was 9, so being a harpist is a part of who I am. I have lost the cathartic, healing effect of sitting down to play. There are a number of songs I have written that I will not have a chance to record. I have been grieving this loss hard.

Another disappointment: after living with the side effects of the Xeloda for 3 months, recents tests show that it hasn't helped. My recent PET scan showed progression in my liver and bones, along with 2 NEW lesions in my pancreas. Also a big concern: I have been having a hard time speeaking. At first I just blamed the chemo, but now suspect brain mets. If that is the case, my time left will be greatly reduced.

So, I'm having a brain MRI Monday, and I see Dr S on Tuesday. Meds will be changed to aromasin and evorolimus (sp?)...and we'll see what comes next. If my brain is clear, we remain on course for just controlling the cancer as much ass possible. With brain ets, the choices are usuallly 1.) do nothing. Life exepectation ca 4-6 weeks, 2.)high dose steroids, buys ca. 3 months, 3.) radiation, buys about 6 months. I'm not sure I want to think about 3 months on high-dose steroids. Don't think that those are memories I want to leave David--I'm nutty enough.

To add to the distress of the last weeks, I lost a friend to metastatic breast cancer about 2 weeks ago. She had lung mets, then brain mets. When the brain mets showed up, she decided not to pursue any further treaatment. She lived about a month after the brain mets were diagnosed. Another friend has taken a turn for the worse, and is entering hospice care today. He has recurrent metastatic lung cancer.

So, in spite of all grieving and sad stuff, I keep trusting the Lord for a plan much bigger than any of us could have. I repeat that I have seen so much good come out of my cancer, especially in terms of realtionships of people around me. None of us are promised tomorrow, and that means living ~~really living~~ each moment. People and relationships take priority over work and hobbies.

So, now that we're up to date on the health stuff, I'll work on some other things next post. I need to tell you all about Bee and other stories about how the Lord has been working. There's a wonderful story about a friend with a beautiful heart and BLT sandwiches. I can't complain.... we are so blessd.

More challenging times

The birds call and flit tree to tree
I hear them through the window...
My precious girl Bee is pressed against my legs
As we sit together on the recliner.

Today I have become nausea,
It has consumed my body.
Fatigue plays with nausea; they have made a game of me
That knows no boundaries.

I focus on the softness and warmth of Bee against me,
The softness of her fur in my hands.
I consider the miraculous gifts of her presence and
And all my comforts, for they are gifts from the Lord.

I try to concentrate on the gifts and the love
That God the Father has given me, and not think about
Abilities lost and what has changed.
Bicycles and kayaks hang in the garage, to be
Brought down for others.

Somewhere in the quiet and inactivity
The Lord will show me how, even in this state,
I can serve Him and the people around me.
If being His hands and feet isn't working,
Let me be his Light, Love and Heart in some way
As I endure as best I can.
Waiting for the bad days to pass.

So very tired...
I will now allow myself a nap on the recliner
Bee in her spot, already asleep.
Sleep will soon overwhelm me....

June 5, 2012 - love someone today

June 5, 2012. In 1942, the Battle of Midway raged in the Pacific June 4-7. It truly changed the tide of the war in the Pacific early on. This morning, I woke up in lots of pain, a little bit more than usual. I lay there in bed, praying, listening for birdsong and detecting the faintest smell of fresh-brewed coffee. I haven't gotten to the point of keeping pain meds in the night stand as Kristi recommended, but I think that's next. Update on Friday's adventure: the nurse from the Sunbury Urgent Care called with the results of the culture from the abscess on my toe: MRSA. The one time I go to another salon for a pedicure, I get cut up and infected. So, cindamycin 300mg three times a day is added to my pile of meds. Has a reputation for causing ridiculous diarrhea. Here were go with the balancing act again. Once again, I am humbled by the efforts my former patients have keeping their meds straight. It's difficult...even for me with all my education and training. Today I will be finishing up my lesson for small group meeting Thursday night. That's interesting and makes me feel like I'm using my brain. Friday is the Relay For Life here in Sunbury. I have been asked to be the Honorary Chairman. I hope I get to say a few words. I want people to know that I believe that my cancer has been a gift and that the changes in me and those around me have been more than worth the physical pain and discomfort. I want to run up to total strangers and tell them to love people. Say what must be said. Some will respond, some may not, but you will have done your part. Low seventies forcast for today. I hope I have enough energy to take the pups outside later and work a little bit in the rock garden. I wish you all a blessed day. Do something nice in secret for someone....I'd love to hear about it.

Miss Bee

There is a wonderful group of Schipperke lovers on Facebook. Some of us met again in April 2012 in Ferriday, LA where one of the ladies lives. Being in LA, and somewhat near New Orleans, this get-together was called the VooDoo Tour 2012. We made arrangements to stay at a fishing camp in cabins. David and I ended up at a Days Inn in Natchez, MS (about 20 minutes away). The cabin was just a bit too primitive for me: there was no comfortable chair to sit in for reading or rest, the bed was sag-city (very bad on the back), so we moved. The others managed nicely in the cabin attached to the main office. We took Jack along, who proved to be a wonderful traveler. Sadly, Boo Romper died in late March. He was 15 if he was a day! One morning he had a bad seizure followed by a severe stroke that removed all his motor control in his limbs and head. My precious Boo. We had been looking forward to taking him along on this trip. Pictures of Boo and Jack:

So Bee is a retired champion. She had an "accidental litter" last spring. One of those puppies went to my dear friend Mary Alexander. His name is Rippy. Mary had recently lost her male Schip, TeeJay and was heart broken. Rippy has been a blessing and balm to Mary's soul. So, during our stay in Ferriday, there was much talk about me wanting to have a female again. One of the gals called Rippy's breeder (Bee's owner), and discovered that she was willing to put Bee up for adoption to us. she explained that Bee is a very sweet, cuddly girl. Perfect!! We were not planning on going home with another dog...and I was afraid that David would think the whole thing was a set up. But-- he was thrilled. Bee and her owner were going to be at a big dog show in Shreveport, LA that weekend. They were driving in from Arkansas for the show, and Susan would bring Bee for us. Mary and Bonnie drove 3 hours to and 3 hours from Shreveport to pck up Bee for us!! Talk about friends!!! Here are some pics of Bee arriving back in Ferriday.

Bee is 9, DOB 3/22/2003. She is a puppy at heart: she's very playful, happy and physically active and agile. She does have some grey hairs on her face and belly, but she seems far younger than her years. We were amazed at how well she and Jack traveled together on the long trip home from Louisiana. Ten hours one day, 5 hours the next. They settled right in and slept -- got out for bathroon and treat stops and behaved perfectly. A quick background on our current canine family: Duke, German Shorthaired Pointer, aged 10 1/12. Formerly David's hunting dog. When David and I got together, I was just not used to the idea of a dog that didn't participate with the family as a house dog. I worked with him, trained him in the basics, and he became a very nice house dog. We have our problems now with him not obeying me, but he is at least a loving, sweet dog to have around. When Israel died in Sept 2008, she was the last of the Kingfisher Schipperke line. I couldn't bear not having a Schipperke around. I watched on line, and found a beautful male Schip at a a rescue in Iowa named Edgar. In order to become adoptive parents, Duke had to be neutered. (Finally!!) Done! We drove to Iowa to get Edgar in October 2008. He turned out to be an extremely shy, almost feral dog. He couldn't do the steps at the hotel. He rode well in the car back to Ohio. He was doing pretty well, until on Hallloween Day October 31, he slipped out the door past our very diligent son, and was never seen again. Consider that Edgar was microchipped, he wore a collar with ID AND he had on a harness. I plastered the vets in this and surrounding counties. He was on the internet, phone poles, bulletin boards. NOTHIING!! We figure he was killed by a coyote, or adopted by another blonde who fed him wel and lived out of state. A few days before Thanksgiving in 2008 we adopted Jack. He and a female had been left tied out at a no-kill shelter with a note saying that the owners had lost their home due to foreclosure. "Jack" and "Jill" (real names not given in note) went to Ohio Schipperke Rescue. Jill was adopted first. When we went to see Jack, it was all over for us. He was shy at first, and he has come a long way. He's probably the most extraordinary Schip I've ever known personality wise. He is wise, sensitive and now since Bee has been herem has proven to be a good leader. He's a wonderful caregiver. He's a happy and gentle spirit. It took a long time, but he and David have really bonded, and now I'd say he's David's dog. Bee had taken over as my primary caregiver, but she too has bonded will with David. We got home from Louisiana Monday late afternoon. I wanted Bee to have a change to acclimate to the home and the scents. We brought Duke home from the kennel Tuesday afternoon. Ever since, we have have trouble with Duke humping Bee. That's all he wants to do. Remember he's a 70 pound GSP and she's a 11.5 pound Schip. She's too nice to be nasty to Duke. She'll lift a lip and scoot away. Jack has taken to jumping in between them and running interference by growling and nipping at Duke. That will usually send Duke away. As time has passed, Bee has become more vocal about her growling at Duke, but she has never snapped. Guess she's too much of a southern lady. So, we're working on it. During the days when I'm in pain, I sit in the recliner in our 3 /4 season room with the heating pad on my back. Jack may be up on my left arm rest or in his club chair. Duke goes to his big round bed in the corner of the room. Bee usually burrows on the leg rest and is in between my legs or next to them. I have my computer on my lap, my Kindle or other books, sometimes my knitting or crochet. I often listen to Christian radio or podcasts on my phone. I'm also working on course work from Vineyard Bible Institute. The company and comfort that the dogs provide is amazing. They are one of God's most amazing and wonderful gifts to us. Oh, yes... I talk to them, I sing to them. They look at me with tht look...."...here she goes again...."....and they ease the lonliness I have some days being here alone. The transition from a very busy medical practice to being home alone was difficult. I've grown more accustomed, and am grateful for the connectivity provided by our phones and computers. I often feel so disconnected -- how can I serve God from here? I'm learning that writing notes, paper or electronic, making little gifts to send...there are ways to connect and encourage. I'm supposed to be writing a book. Have to get back on that. No matter what your spiritual beliefs are, I want to share how David and I have managed to deal with my illness and the huge life changes we have both experiences. I hope to get back to ork on that soon. So...it seems like God has our little family just right. The four- and two- legged Linnabarys love and provide for one another in ways we had never imagined. God provides, and has an awesome sense of humor in the bargain. The generosity of Susan (Bee's owner) and of Bonnie and Mary for giving up an entire day driving in the rain to go pick Bee up for us are very humbling. Love in action.

Blogging again....

I have made a million promises to myself that I would keep up my blog. I also have made a million excuses about why I haven't done it: too much has happened, too little going one, I don't feel well, you name it. So~ there may be short snippets here and there, but so be it. Things may be chronologically out of order~~ I figure most people are intelligent enough to put things together. Today is a perfectly lovely day here in central Ohio. It's in the mid 70s with low humidity. Today is also my colleague's birthday: CNP and personal heroine Pam. We've shared an office since July 2, 2006. Didn't get any high calorie nonsense into the office today. Too bad. Happy Birthday Pam! I miss you! Yesterday I had my Zometa infusion, and today my body is protesting.We know that it's working: the last PET scan showed less activity in the bones than in the previous scan. My bones are aching more that usual (typical side effect), and I am thoroughly exhausted. Wiped out. No energy. Tired to the point of it being scary. I have done nothing today except sit in the recliner and either sleep, or do "recliner things" like read or listen to Charles Stanley or David Jeremiah on MP3. While the bones seem less "hot" on PET scan, the MAy 17 CT scan showed 4 delightful new tumors in my liver that weren't there before. They range in size from about half an inch to one inch in diameter. Good news: there's more healthy tissue there by far than tumor. Bad news: we don't want tumors in my liver, period. Push "rewind" on your mind for a sec and revisit The Arnold in "Kindergarten Cop". Now, we change things just a bit as you pull up a scene and hear his deep, Teutonic tones saying, "Yes, it is a tumor. Four of zem." So, as I had posted earlier, they had started me out on carboplatin and taxotere. That was fine and dandy, the reactions to the taxotere not withstanding, until I had a very special reaction to the carbo at home one night about 11pm. I looked like a tomato. Red. Round. Puffy. I gobbled down some Decadron and Benadryl and called the hospital. Needless to say, I was never given that drug again. Switched to Taxol alone. Taxol is the synthetic version of Taxotere. I was really having problems with numbness and tingling in both hands and feet. This nerve damage (called "neuropathy" in medical-speak) is really very painful. Anything requiring fine motor skills became difficult and painful. The tips of my fingers became so painful that I couldn't get the dogs on and off their leashes or fasten buttons or earrings. Taxol stopped. I just havent' had great luck with these breast cancer meds. Either they don't work / lose effectiveness OR I don't tolerate them. So, around May 11 I started an oral medication called Xeloda. I take four 500 mg pills twice a day for two weeks, then take a week off. I start my next two week round tomorrow. I can't say I felt a lot better off the med than on it, but will withold judgement until I've been through a couple of cycles. I just hope it works. People hear I'm on chemo and they ask, "When will you be through with it?" The answer is actually a little more than most people want to hear: I will never be "through" with chemo. I will be on something for the rest of my life, because the aim is control, not cure. They tell me there are still other drugs to try if this one fails. That's good. Finally, I know that God has some things for me to do yet, or I'd be outta here already. He IS using this every day for my good. Other people are being touched and changed.... and I will say it over and over --- the cancer has been a gift that I wouldn't trade. Next time I'll write about our new little Schipperke girl "Miss Bee". She is a nine year old retired champion who miraculously came into our lives as a fun companion and nurse. What could a dainty, small, 11 pound girl have to do with bratwurst?

Getting ready for Christmas

This time last year I wasn't so sure that I would be around for another Christmas. I'm sicker this year than I was this time last year, but I'm still here, still kicking, still not giving up.

I'm really excited about getting to play the harp with the worship band at church. Playing the right music for the right reason in the right venue. We have three Christmas Eve services, and after the last, we are having whoever wants to come over-- over to the house for traditional German Christmas goodies.

For Christmas morning, we're bringing back an old tradition of mine: the Christmas Morning Cozy open house. Started back in the early 80s when I was single and living in a condo complex with a lot of other singles. One year I just invited everyone in the complex to come over Christmas morning for breakfast. I made my grandmother's pecan rolls, had German stollen, fruit, coffee, cocoa..it was great. People wandered over between 9 and 1pm - some dressed, some still in their PJs. It was great.

Greatest blessing this year was having my nephew James, his wife Patti and their step daughter Maggie here from Norfolk, VA. James has been career Navy for about 16 years. The last time we were together at Christmas time was 2002. He was stationed out in Seattle, for one, and was usually out at sea as Chief of one of boomer subs. So between all that, my work / school schedule it was impossible to get everyone together. In 2002 we met in St Louis for a few days of fun in December. That was the last December I had seen him.

Today was another medical adventure- had another EGD. Good news: the esophageal ulcer has healed up pretty well, and is now mostly just inflammation. The stricture was back, which I knew by the feel of it, and Dr K dilated it. I should get a few months of comfort out of today's procedure.

They have scheduled me for a port placement on January 5th. My next chemo is scheduled for Jan 3. Don't know weather they'll delay the chemo, or if they can do a US peripheral IV placement for the chemo and keep it on the 3rd.

I'm just hoping to hear about when they PET scan will scheduled. I'm hopeful that the chemo has had some controlling effect on the metastases.

I have pain in my back that is reasonably contolled with my medications. It's just weird to feel the pain knowing that it's cancer. It just went so fast --- so much faster and further than anyone expected. It's everywhere. Can it be reined in so that I can have some more time?

I trust the Lord to be using my cancer and my experiences for my own good and His glory...and for the good of countless others in ways that I may never know. I am unable to practice my profession right now-- and I have to trust that the Lord will show me how I can still serve Him and others...maybe in ways I haven't yet considered!!

I'm enjoying hanging out with my sister, her husband, David, the pups,....baking goodies and just enjoying their company....thank you Lord for my family and friends. I pray for continued strength for the next round of chemo: what I need for each day, dear Lord as you have promised.

Chemo day round # 3

Happy Birthday to me. The big 53 today--- the day after my third cycle of docataxel and carboplatin.

Those of you that know me personally would confirm that I am not a whuss who shrinks and cowers in the presence of pain or discomfort. I can honestly say that the post op surgical pain was easier than the chemo---- I understand it and it makes more sense to me. Everyone is different and will have different responses and different side effect issues.

For me, I become nausea for 10 days. Reading for pleasure becomes difficult because it feels like all the brain wires are crossed. "Fatigue" hardly begins the bone and mind numbing paralysis of spirit that I experience on this stuff.

The scariest parts are the emotional / psychological / spiritual aspects. I understand situational anxiety, grief, garden variety depression....but the feelin of being in a very deep, dark pit, totally disconnected from God and family.....undescribable. I must just repeat over and over to myself --- this too will pass. 10 bad days, then return to weakness and fatigue.

Today is day 3. Feeling rotten already. The point of this blog is not to just get on here and complain about how awful I feel, but to rejoice also in what the Lord is doing in my life and in the lives of others around me through this cancer dance.

So-- right now we are hoping that the chemo is keeping the mets reined in, and that we can buy some time for me with the chemo. As long as I can tolerate it. I am blessed with a wonderful Savior, husband, family, friends, church family, co-workers and canine companions that are with me every step of the journey. I am surrounded by love. How can I complain? Why NOT me?