Challenges and Celebrations

February, 2009

I am now the proud Grandma of a darlin lil boy...Coltyn Roby who joined us the first part of the year. His mommy is my youngest daughter, Kelly. Coltyn joins older brothers, Jadyn, Dylan and Trace. I haven't been able to get to Arizona yet to play Grandma, but I hope to soon.

unfortunately, I'm fighting the beast again. But I feel really confident that it's just a little bump in the flight plan. I started on Revlimid 3 weeks ago. I seem to be handling it well. I do get tired a little easier than normal, but other than that, I think it's going really well. Dr. McDonagh and I decided not to add Dex to the mix. It leaves us some options. If worse comes to worse, I can go back on Velcaide, which put me into remission in 2006. We wanted to try Revlimid because it's a pill. With Velcaide, I'm tied to the clinic and it puts a kabosh on my travels sinces it's an IV push twice a week.

One thing I have come to treasure is the wonderful friends I've made all over the US and Canada through the various MM list serves. Because of their suggestions, I was able to get help paying for my treatments. Revlimid is $8,000/mo for the first month and $440 ea month after that on my Medicare Part D. There is no way, I could handle this. But after posting my problem on the list serve, my wonderful friends steered me to the Chronic Disease Fund. I was able to get my drugs paid in full thru combining what my insurance would pay, a grant from the Chronic Disease Fund and help from the drug manufacturer. I am extremely grateful to my MM friends for their help.

That's one thing you can count on, if you're newly diagnosed...there are people out there willing to help, whether it be answering basic questions, offering moral support, or giving you suggestions of MM specialists near you...they are the most giving group of people I think I've ever met. They're my inspiration.

Here's to 2009. May it be a year filled with happiness, hope and new beginnings.

Best Wishes,
Susan

Christmas, 2008

As you can see below, life is good! Although my Free Light Chain numbers have been doubling in the last couple of months, my PET scan is still looking very good. So I will continue to enjoy every day to the fullest and praise my Father in heaven for the blessings he continues to bestow.

Best Wishes to you and yours for a healthy, happy and joyous New Year~

Susan

Merry Christmas 2008

Make a Smilebox slideshow

Little Blimp in Flight, But Smooth Sailing Now

October 17, 2008

Update: I had to undergo 10 days of radiation for a tumor on my clivical (sp?) this past spring. Made it weak, and then broke it. Not fun, but just put my arm in a sling for a few weeks to keep my shoulder stable and doing great now.

So as of March, 2008, I've had 2 years of remission. I also have a new man in my life. There may even be wedding bells in the near future! There is NO WAY two years ago, laying in that awful nursing home I would have dreamed that this day would come!!! I'm so very grateful ~ to my church family who took such good care of me; to my UK Hospital Orthopedic Surgeon, Dr. William Shaefer who put my back together so I'd walk again; to my Onocologist at UK's Markey Cancer Center - Dr. Kevin McDonagh and my nurse team leader, Galisha Watts. Without them, I know that I wouldn't be here telling you all my wonderful news. Three Cheers to our support network who make life a REAL posibility!!!!

Hugs to you all,
Susan

Good News!

Had a terrific report on my birthday. My Onocologist says my bloodwork is almost perfect and the PET scan doesn't show anything we didn't know about, or anything that would require going back into treatment. To say that I was relieved is an understatement. So I rewarded myself to a flying road trip to WI to pick up my new puppy. If anybody can help me come up with a name for her, I'm open. Baby Doll (my pound poodle) wasn't overly excited about the little imp, but he's getting more tolerant as the days go by.

Susan

MM Rears It's Ugly Head...

Well, I almost got a full 2 years in remission. Until the end of February when a sore shoulder turned out NOT to be a torn rotator cuff, but a bulge in my clavicle. So I took 10 radiation treatments and have a PET scan set for March 14th. Then I get to go talk to my Onocologist on my birthday to discuss the results and what we need to do next. Sigh.

The thing that is important to remember with MM, is that it's a mind game. With all the new drugs, we are getting longer and longer remissions. Eric Voigt is in his 4th year of remission, I believe. Hopefully this little "incident" I've had will be nothing more than a "bump in the flightplan" and I'll go back into remission for many years to come.

It took me about a week or 10 days to come to grips with this new episode. When you go into a lengthy remission, it's easy to "forget" that you even have cancer. But then something like this happens and you remember how precious and how tenuous life really is with MM.

A few weeks ago, I had to accept a different brand of the Fentynal patch that I wear. Sandoz had recalled a certain lot number of their patches, so for awhile it will be hard to find them. It was a diasaster. Last Thursday I hit the wall. I was in so much pain, I could hardly function. But because I live alone, I had to figure out a way to help myself. I e-mailed my Oncologist, called around town to find a pharmacy that still had some Sandoz patches that weren't part of the recall, then had to drive an hour and half to pick up a new script, go to the independent pharmacy I found in the next town over, then call the insurance company when it wouldn't go through (because of course they didn't want to refill the new prescription because it was too soon) and get home. It was a monumental effort. But within 45 minutes of wearing the new patch I felt 75% better and now, 3 days later, I'm pretty much my old lively self.

It's times like these I wonder what will happen to me when I can't do stuff like this for myself. My sister came out from Vancouver, WA for a week so that she was here for the first 4-5 of my radiation treatments. That was WONDERFUL. But there will come a time, I'm sure, when she may not be able to drop everything and race to Kentucky to be with me. My children are in Arizona and busy with their own lives. I kind of envy those people who don't have to face MM alone. I think the only thing I can do is try to prepare some kind of a plan. I'm not exactly sure what it should look like, but I think it would need to address issues like paperwork, what to do if I can no longer work part-time, who to call when I need someone to be here at home with me. Maybe even who would be willing to be my advocate if I get hospitalized again. That's a biggy, because it's asking a lot of someone who isn't family. But it's critical. You NEVER want to go into a hospital without an advocate. It's unfortunate, but I've found it to be true, that you get better care if the staff knows that someone comes every day to check up on you.

So today, I tried to get a little grounded. I grabbed my camera and headed out. We had a ton of snow on Friday and it's still on the ground. I got a couple of pictures, I think I'll be able to work with. Have a look and enjoy!



God Bless,
Susan

19 Months into Remission-October, 2007

I realized that it had been quite awhile since I updated my Blog...I've been off Chemo now for 2 years come March, 2008. It's almost as if that "cancer stuff" happened to someone else. Except I read over my posts and it brings it all back front and center.

But as I've said all along, life needs to be lived in the present. So I'm really truly trying to live as though I'll be here to see my 14 month old grandson graduate from high school. So much has happened in the last year or so. My youngest daughter got married and blessed me with a wonderful son-in-law and grandson. I'm trying to get used to my new role as "Grammie Susan". It's actually kind of fun!

I've registered with Photoshelter.com to offer my photographs for sale on-line. That's an on-going learning experience. I'm dog sitting, which is fun. Still walking from a mile to three miles a day. Also started water aroebics, which is "way cool", as the kids say. So I am keeping busy between church, friends and the dogs...so life goes on.

For those of you who come upon this site after either you, or someone you love, being diagnosed with Multiple Myeloma. Please know that there is hope. Remission is real. I personally know a number of people like me that have been in remission for as long as 13 years! With all the drugs that are coming down the pipeline, it is conceivable that MM might not be the death sentence it once was. So far, I'm living proof of that. The text books used to say a life span of 3-5 years after diagnosis. I'm almost 3 years out now and I'm still truckin'!!!!! (grin) So have faith. Find an MM specialist, get involved in a support group, either on-line (there are 2 excellent MM listservs) or face-to-face, be your own advocate and ask TONS of questions.

Thanks for stopping by. I enjoy reading your comments...

Hugs,

Susan

Scenes from Keeneland's November Sale

We haven't had much of a fall here in KY. It went from summer directly into winter. The leaves turned color, but didn't stay on the trees long enough to give me a chance to catch their beauty. I did get over to Keeneland during one of the opening days of the Breeding Stock sale in November. While I was there, one mare brought $6 Million. Here's a behind the scenes look at all the action.



One groom evidently didn't duck quick enough. I didn't see what happened, but it was pretty obvious who got the worst of it. He was actually getting his scalp stitched up! I saw the needle and thread!!!

Ohio Renaissance Festival

Oh, what a wonderful day we had stepping back in time at the Ohio Renaissance Festival! I loved the costumes, the humor, the jousting....everything! I took a ton of pictures. I particularly liked the knight on the black horse. The "Lady", whose hand he is kissing, had just agreed to become his wife a few hours before this picture was taken. I've always loved history and this was history at it's best.

We were able to see an artisian blowing glass, to hear children's stories, to watch a magician escape from a strait jacket. My friend's Grandson especially liked the human chess game. I was fascinated by a women who was braiding hair in the most intricate of patterns! It made me wish for the days when women wore beautiful dresses and had flowers woven into their hair. Sigh.....

My Roommate

By popular demand, I am introducing you all to the man in my life~my adorable roommate. He is the absolute best. He doesn't snore, hog the bed, leave his clothes in a heap on the floor or share his affections with another woman. He's housebroken, listens attentively when I talk to him, acts hysterically happy when I come home, gives me wonderful wet kisses and all he requires in return are 2 square meals a day, a walk and lots of lovin' ! I can do that!!

Meet Baby Doll, my pound poodle. We've been together for a little over a year now. He's very sophisticated as you can see. He loves to go with me when I go exploring around KY. These pictures were taken at Boonesboro State Park My vet thinks he's probably about 5 now and is probably a purebred. She says that doesn't happen much, for a purebred poodle to find its way to the Humane Society. But that's where we met. He even came to the hospital several times last summer to cheer me up.

There, my secret is out. My boyfriend has 4 legs and doesn't shave every day! What can I say???

Missing Friends

Today I got a good report from my cancer doctor. I'm holding my own. Not in remission, but still stable.

But the sad news was that one of my MM friends died a few months ago and I just heard the news this morning. It kind of knocked the wind out of my sails. He was such a nice, Christian man. He left a wife and 3 kids. He wasn't that old either. Maybe late 30's, early 40's.

So tonight I'm a little sad, wishing I had been able to see my friend before he died. But knowing that some day I'll see him again.

I urge you, my friends, to give that extra hug, that un-solicitated praise, that soft "I love you"...to the ones you love tonight. Take time to walk hand in hand, to sit outside and watch the sun go down and the stars come out. Leave the dishes in the sink and wrestle with your kids. Turn the TV off and read a book together cuddled on the couch. Make a fort out of tree limbs and cook dinner over an open fire. Don't let every day life dictate to you. But rather, reach for something richer. Make memories that you'll laugh over when your kids are married with kids of their own. Enjoy the little things.

And remember, above all, that God desires to give you life and that more abundantly than you can ever dream of, or wish for.

God Bless you all~

Susan

Cancer...

Tonight I saw the Extreme Home Makeover show that was about the family in Texas, whose 7 yr old daughter had cancer. It was precious. But I haven't been feeling very well the last little while. I go back in this Wed. for another check up. The little girl told one of the Designers that she wasn't ready to leave this world yet. She didn't know what heaven was going to be like. That's kind of how I'm feeling tonight. Caught between two worlds. On the one hand, I think I'm ready, if the Lord should "turn out the lights", but on the other I'm still scared of the un-known. But for me it's not really the fear of being gone from this life...but the passage into the next. I'm afraid it will hurt. That it will be a solitary journey that I'll have to travel alone...frightened...

So, while family and friends tell me how wonderful I look (which helps them to believe that I'm not really that sick), I'm laying here tonight dreading the thought of perhaps more chemo soon. I've been off drugs now, since March. And on the whole, it's been wonderful. I've really felt pretty good and had lots of energy. But just lately, I'm feeling kind of "ucky", especially after I eat. Have been taking anti-nasea drugs that help. But tonight I feel a little like I'm crawling out of my skin. Kind of antsy. Maybe I slept too much during the day...who knows. But I'm still tired.

I had all my camera equipment stolen the first night on vacation in Seattle a few weeks ago. I finally got enough money together (while I'm waiting on the insurance to process) to buy another camera. I went out yesterday and shot some more pictures. I really didn't realize how very much I missed my photo shoots until I couldn't do them for awhile. For me, they're therapeutic. Enjoy!

Humor Doeth Good Like a Medicine!

A dear friend sent these to me today and started my day with a smile. Especially since I had just gotten back from witnessing the birth of my first Grandson. Have a good chuckle...it's therapeutic!

TEACHER: Maria, go to the map and find North America. MARIA: Here it is. TEACHER: Correct. Now class, who discovered America?
CLASS: Maria.

TEACHER: Greg, how would you spell "crocodile?"
GREG: K-R-O-K-O-D-I-A-L
TEACHER: No Greg, that's incorrect.
GREG: Maybe it's incorrect, but you asked me how "I" spelled it.

TEACHER: Ryan, what is the chemical formula for water?
RYAN: H I J K L M N O TEACHER: Ryan, what are you talking about?
RYAN: Well, yesterday you said it was H to O.

TEACHER: Hunter, name one important thing that we have today that we didn't have 10 years ago.
HUNTER: Me !

TEACHER: Adam, why do you always get so dirty?
ADAM: Well, I guess it's because I'm a lot closer to the ground than you are.

TEACHER: Beth, give me a sentence starting with "I".
BETH: I is...........
TEACHER: No Beth.....Always say "I am".....not "I is".
BETH: All right. ........"I am the ninth letter of the alphabet."

TEACHER: George Washington not only chopped down his father's cherry tree, but also admitted it ! ; Now Alex, do you know why his father didn't punish him?
ALEX: Because George still had the ax in his hand.

TEACHER: Now, Macy, tell me frankly, do you say prayers before eating?
MACY: No M’am, I don't have to. My Mom is a good cook.

TEACHER: Daniel, your composition on "My Dog" is exactly the same as your brother's composition. Did you copy off of him?
DANIEL: No teacher, it's the same dog.

TEACHER: Parker, what do you call a person who keeps on talking to people who are no longer interested? PARKER: A Teacher


"GROWING OLDER IS MANDATORY. GROWING UP IS OPTIONAL. LAUGHING AT YOURSELF IS THERAPEUTIC."

When Hearts are stretched....

In the last 2 days, I have talked with two different people who have lost loved ones after long battles with ill health. It stretches my heart, because I have now been both the caregiver and the patient. I know the emotional roll a coaster that both people go through. But I particularly ache for the caregivers. It is so very hard to feel helpless, especially to those of us who are used to being "take charge" kind of people. We want to attack the disease and win. Go to the doctor, find out what is wrong, take the cure and go on with life as before. But chronic illness isn't like that. It doesn't respond to "taking two aspirin, rest and you'll feel better in the morning". This leaves the caregiver frightened because things are "out of control".

When my Mother died, my Dad started a journal. It was his way of working through the heartache of losing the woman he had loved for over 50 years. When my daughters were little, their Daddy had his legs crushed from the knees down. I wrote poetry. Funny. I only write poetry under stress. Otherwise, I like editorial type writing like this. This morning, a new friend shared a poem that he wrote, after a dear friend died. It touched me so much, that I cried right along with him, even though I had never met the woman.
What we need to concentrate on, it eems to me, if we are people of faith, is that in the end....the good guys win! I know that every day I'm given is a gift. I try to keep in mind that tomorrow is not promised to any of us; and those of us with chronic illnesses, or in the case of MM...incurable illnesses, must strive to live in wonder. We need to celebrate each day with the wide eyed wonder of a child. To live life as fully as we can, to put away the little things, to love fiercely, to embrace new adventures, to mend old fences and reassure those around us that death is NOT the end of our story. But rather, death is a new beginning where there is no more pain, no more hospitals, no more "pokes".... A place where love engulfs you and your heart is at peace.

Tonight let's all light a candle for those we have loved and lost, to celebrate the magical light that they brought into our world. And tomorrow, let's keep our eyes open for God's special gifts, sent to delight us like this butterfly I spotted when I was out on another photo shoot yesterday. I was able to capture him as he danced on the flower just for me....

Gates of the Bluegrass

Ater seeing my Onc last Wednesday, I treated myself to an afternoon of shooting pictures. My first stop was the Thoroughbred Park in downtown Lexington. The bronze statues look so life like, you expect one of them to move at any minute. Then I drove north on Newtown Pike. One of the farms I enjoyed was Cobra Farm. Owned by the gentleman that designed and marketed the oversized Corbra golf clubs. I hope you enjoy this short pictorial trip thru the Bluegrass!