Update 2011

It's been so long since I updated this site I almost wasn't able to get in. So much has happened this year. My middle daughter came to live with me 4 years ago now. She has been such a blessing. We went to AZ for Christmas to see my other two daughters and the grandkids. Had a wonderful time. But when I got back I went into the local hospital (Versailles, KY) with pneumonia. Got home and 3 days later I was completely out of it. Sarah called the EMT's and we made an ER run. Turns out I had gone into complete renal failure. My kidneys had shut down. I had too much stored up protein and it was bottom line..killing me. From what I'm told, for a couple of days they didn't even know if I'd live thru it. The first couple of days were a nightmare. I was delusional (THAT was pretty scary), I was partially awake when they put my dialysis port in my chest (not my idea of a good time). They did a couple of procedures, one I can't remember the name of, but basically pulled liquid out from around my heart and lungs; and they started kidney dialysis. I was in the hospital for 3 1/2 weeks and was finally well enough to go home. Sarah and I lived in a townhouse with the bedrooms upstairs. Since I couldn't safely go up and down stairs, Sarah got some men from church to carry my bed downstairs. We put it in the dining room and took the dining table upstairs to store it. Thank goodness the kitchen/dining room was big enough to fit a queen size bed. It worked out great. I had a bathroom and quick access to the fridg, if and when I could get myself to eat. I've lost 35 pounds since Christmas.

My sister and cousin came out for my 60th birthday in March. We had SOOOoo much fun! No one had ever given me a grown up birthday party before. We went to lunch at a neat Italian/pizza place housed in an old church. Then we took a drive thru Lexington Gardens (the cemetery). I wanted to show my cousin the beautiful flowers and flowering trees. My sister and I had gone here before with our cameras and got some gorgeous pictures. When we got home, I had a nap and they came back after dinner with a birthday cake, ice cream, presents and cards from almost all of my cousins back in Oregon. They even made me wear a tiara that said 60 in silver glitter!! It was a hoot. It was hard to say goodbye to them. My sis and I held on just a lil longer, thinking it might be the last time we saw each other.

In late spring my oncologist gave me the "end of life talk". He gave me 3 options. I could stop chemo and just keep going on dialysis; I could stop dialysis and chemo and probably die within 2-3 weeks very peacefully or I could try ONE more drug called Doxil. I actually took 10 days to decide. I talked to my daughters and my sister. In the end, I decided to try the Doxil. All we were hoping was to keep the cancer stable. We had done a bone marrow biopsy and found 83% bone marrow involvement. With the Doxil we hoped to keep it there, never dreaming that we'd get a response. But we DID!! My numbers have gone down twice now. I'm feeling Sooo much better now than I did last spring. Then this past weekend, we hit a bump in the flightplan. I got to the clinic for chemo and was told the hospital didn't have enough Doxil. I knew there was a shortage. I'd read about it on-line. From what I've read there are something like 182 different drugs, many of them cancer drugs, that are in short supply for various reasons. UK only had enough for 1/3 a dose. So we decided to try calling other hospitals. We lucked out. St. Joseph had some and was willing to share. So I got my infusion after all (after being there from 8:00 am until 4:00pm). What makes it hard is that Doxil is used for all kinds of cancer diagnosis, not just MM. So there are a lot of people depending on it, making the demand more urgent.

My daughter and I were living in a pretty townhouse community in Versailles. We had moved there in March of 2010. But one night we heard 4 pops. We looked at each other and looked outside. There was a man lying behind my car. Turns out he was dead!! 9 bullet wounds to the head and chest. A drive-by shooting RIGHT IN FRONT OF MY HOUSE!!! The drug dealer 3 doors down wasn't on the apt lease, but his girlfriend was. My physical therapist was coming to the house twice a week. One time he came and as he was getting out of the car, he saw this man with a fat wad of money paying out to the others standing around his car. Talk about cocky!! Right out in broad daylight, knowing full well there were now cameras covering the parking lot. Come to find out that this apt community has had a bad name from the getgo. Wish we'd known. When the police came, they did their CSI thing. Even dug a stray bullet out of the front siding of my house right above the window. Eight inches lower and it would have killed my daughter. She had been sitting at the computer in the front room directly across from the front window. We decided it was time to leave. We started looking for a place without stairs in a safe neighborhood. Our local sheriff helped us find a duplex and we moved in June 1st. It felt good to be safe. The apartment is much smaller though, so I've had to work really hard and be creative in storing what we aren't using.

Our 1988 Dodge Aires finally gave it up. Timing couldn't have been worse, since we'd emptied my savings for the security deposit and first months rent, etc. on the duplex. I went on-line to the MM Acor Listserv and told my MM friends about it. Would you believe a woman in Idaho sent us a check for $1,000 to buy a new/old car?!!!!! We were blown away. She had never even met us, didn't know us from Adam. But she felt she had been blessed and so she was in a position (even tho she has MM too) to help us. I went to a local used car lot owned by Larry Wilson. The sheriff vouched for him. Larry's been selling cars there for 25 years. I told him what we needed and within a couple of days we had a 1992 Buick LaSabre for $1,000. We took it to our mechanic and noted what needed fixing before we bought it. Larry fixed everything on the list plus a couple. It's been doing pretty good until this last week. Came up with a flat tire and the battery died all in one week!! So $122 poorer, we keep truckin! (grin) Isn't life fun???!!! (grin)

The point of all this is to say that even when it looks like you're down for the count~ be open to other options. Doxil is an older drug. One we hadn't tried yet. Who knew it would work like it has?!! Who knew 3 months ago that I would not only still be alive, but well enough to plant flowers and paint the kitchen?? Whereas last spring Christmas 2011 with my grand kids looked impossible; flying commercial would be too dangerous with a compromised immune system. Now my doctor says "go for it. If you don't travel or do those things that you long to do, what's all the grief for then?" I couldn't have said it better. I'll have to plan carefully, buy flight interruption insurance, wear a mask and that kind of thing. But bottom line? The world has opened up again.

There is so much I want to see...the fall colors in Vermont, the little fishing villages in Maine, maybe seeing the Biltmore Estate at Christmas when it's completely decked out. Going to Chintotgue to see the pony swim...(Misty of Chintotgue was one of my all time favorites books as a little girl), going to NY to see a Broadway play and ride a carriage thru Central Park. I feel like God has given me another chance to fulfill those dreams before I go "home".

So for those of you just surfing because you or a friend or loved one is recently diagnosed and for those of you that have been in the battle for awhile...bottom line? NEVER give up. Winston Churchill is rembered often for an adress he made to a graduting class. Everyone was excited to have the great man at their commencement. Churchill got up when it was time for him to speak straightening his tie as he walked somberly up to the podium. He stood erect, looking every inch the master statesmen that he was. The room got quiet as Churchill surveyed the eager faces, knowing these were the best, the brightest. The ones destined to shape the world into the next mellinium. As the minutes drug out, the students started to squirm, wondering if the great man had forgotten his speech. Finally, he spoke. "NEV-AR give up!!", he said. Again he allowed minutes to pass as he looked out over the sea of eager young faces and said once again, "NEV-AR give up!!" The young people looked at each other in confusion. Churchill allowed several more minutes to pass before he spoke again. His final words of wisdom to the next generation? "NEV-AR give up!!!", he said at last. Then turned and returned to his seat. There was no need for a long winded speech. Bottom line? NEVER GIVE UP!!!

Remember to love deeply, laugh often and to Nev-ar give up~

God Bless,
Susan

Merry Christmas, 2009!

Welcome to my little house!


I go into the Christmas season with mixed emotions. On the one hand, I have lost 2 of my closest MM friends in the last 8 months. Cindy Shaeffer, a Canadian, was my hero. She was someone who had determined to live EVERY moment. Thanks to the generosity of family and friends, Cindy's "Bucket List" was largely realized. She even fell in love, a few years ago, with a wonderful man she met in Mexico. She loved Barry so much; and he enriched her life in return. Her Bucket List included everything from swimming with the Great White Sharks, to a girls weekend gambling in Reno, Nevada. She ALWAYS had a smile, a kind word. She was enthusiasm personified. Her energy and courage was awesome. Because of Cindy, my own MM battle has been easier. She was my hero. If Cindy could do it, then so can I. We never got a chance to meet. It had been on my "Bucket List", but unfortunately her journey came to an end November 3, 2009, before we had that chance.

My other friend, Laura Gott, was from Long Island, NY. Laura and I had never met either. She was a wife and mother. We had dreamed of meeting in NYC to see a Broadway play together, but alas, that dream was never realized either. Laura and I exchanged long e-mails, talking about our families, our hopes, our regrets, our dreams for those we'd leave behind. Laura died last April. I didn't find out, until June, when her husband Michael e-mailed me the news.

So 2009 as been a test. I had to go back into treatment myself in February. Finished in July. We didn't get my numbers down quite as far this time, as we did at first. The first time, after 10 months of treatment, my numbers were down into the single digits. This time they are in the low hundreds. But I'm feeling great. I have my middle daughter, Beth, living with me now. We have enjoyed each other and it's been fun. She will soon be married to a wonderful single father with a houseful of kids. I like him a lot and the kids are so sweet. They call me "Grams" and actually enjoy visiting with me on-line. It's wonderful.

My youngest daughter, Kelly's little man, Coltyn was born Jan 3rd. He's in the picture here with his big brother, Jadyn who was three in July. I haven't been able to hold him yet, wasn't able to be there when he was born as I'd hoped. But maybe for Christmas. He gave us a scare at first. His hearing was not fully developed. But he seems to hear now, turns his head when you call his name. He captures your heart with his smiles and is already trying to walk.

This picture is of Trace (11), Dylan (9) and Jadyn (3). Trace and Dylan play football. Jadyn rides in junior rodeo and recently took 3rd place riding his sheep at the Prescott Rodeo.

My eldest daughter, Diana, has had a rough 18 months. She has brittle bone disease and fell off a ladder and smashed her ankle. Thank God she found an extremely talented surgeon in Phoenix who was able to put my Humpty Dumpty back together again. It's been a long road, but she's walking and grateful. She just resigned from Quicken Financial where she was a mortgage banker. It was stressful and she was good at it...but the commute took it's toll. She's now decided to pursue a career in the medical field.

I continue to enjoy my little house in Midway, KY. There is just something so special about living in a small town where you know people and they you. I like the feeling of community here. I've continued my work coordinating our small food pantry. We're busy right now, determining families that need our help at Christmas. The whole town is getting involved, from the churches, to the Woman's Club to the Lyons.

I'm also continuing my romantic journey with a wonderful man my Beth introduced me to. It's fun to know that even at our age, there is such a thing as "starry eyed love".

So, as you enter into this Christmas season, my wish for you is that you will remember who's birthday we celebrate - that of Jesus Christ. That you will be surrounded by those you love; and that laughter and joy and blessings will fill your new year.

Merry Christmas everyone!
Susan

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."