Merry Christmas from Bob and Terri!

Christmas Eve at the stuga

Getting Ready for Christmas!

Spending a couple days at our stuga (Swedish for "little home") in Michigan, relaxing and finishing up the last of our Christmas preparations. As you can see, Terri is really into baking cookies and I am her first assistant. We baked up a number of our favorites, including Swedish pepparkokar and gingerbread boys. We did a little hiking, too. We'll spend Christmas Eve up here, attending services at our local church, before heading back in to the city on Christmas Day for the Douglass Family party at my sister's home. That should be quite an old-fashioned fun-filled Christmas celebration! Anna and her family will come in on the 26th to spend a couple days with Grandmor and Grandpa Bob, Auntie Liz and Uncle Mike. What fun that will be!

Once around the pond

Out for a walk

Unfortunately, my back pain returned about 2 weeks ago. It has been most challenging when I get up in the morning which takes a fair amount of time and something I cannot do by myself. Quite frustrating! Doctors have adjusted my pain meds to deal with the pain which is their main concern rather than the source, but it remains a challenge for me. Hopefully it will clear up once I begin the transplant prep which will start on January 3.

In the meantime, we look forward to a very joyous Christmas and wish for you the happiest of holidays! Keep in touch!

Busy, busy, busy

  

Ready to go!

That's the one!

How about a wreath?

Grandmor and Anna

With Christmas coming and managing my illness, I find that the days are filled with things to do, but it has kept me from writing in my blog so now I am playing catch-up. The good news is that I have responded so well to the chemotherapy that the last round of treatments was canceled. The last treatment was this past Wednesday. Hallelujah! The schedule has now been set for my stem cell transplant and I will begin initial preparation for it just after the first of the year. (There will be some heavy-duty chemo treatments during that time so we will see how those go.) I'll be hospitalized off and on for about 4 weeks in January and February for the procedure. Most of that time will involve the transplant of the stem cells back once they have been harvested and cleaned up.

Unfortunately, in the midst of this good news, my back pain did return so I am working with the pain specialist to bring that under control. It is most painful first thing in the morning which makes it very difficult to get out of bed. Hopefully I will have some success there as I had been getting around quite well just 3 weeks ago.

Terri and I had a wonderful time in MN for the St. Olaf Christmas Fest. The concert was filled with many of our favorite selections from over the years which seemed especially appropriate this year. It really set the tone for the Advent season for us. As you can see from the photos, we also had a chance for a photo opportunity with little Anna as the family went out to pick their first live Christmas tree. What fun! Grandpa Bob helped to set the tree up and get some of the lights on before we had to leave.

Since that time Terri and I have been doing what I can to get ready for Christmas. Even though we have tried to cut back this year there still has been lots to do. Today, though, I feel in a good place as it appears that all is just about ready. Sometime in the next week we'll head up to MI for a few days of rest and relaxation. We are really looking forward to that as they got about 14 inches of lake effect snow in the last week. It'll be a winter wonderland. We'll celebrate Christmas Day at my sister's house at the Douglass Family Christmas party and then with our kids just after Christmas. It should be a wonderful time, especially with little Anna around, and we are looking forward to a joyous Christmas.

A Powerful Piece

If you haven't had a chance to view the Today show interview with Kathy Giusti, the founder of the Multiple Myeloma Research Foundation (MMRF), I encourage you to do so right away. Kathy is an amazing woman, a multiple myeloma survivor, who spearheaded an effort to take the disease from a rare and relatively unknown cancer 10 years ago to one that today is at the forefront of cutting edge technology and treatment. As part of that journey, she raised over $150 million dollars to fund the research. It truly is a riveting story and I am so thankful that I will directly benefit from her efforts.

As my cousin wrote to me immediately after seeing the segment, "Just finished watching the Today show and wanted to tell you how wonderful it was to watch this segment on MM. An absolutely powerful, uplifting and positive message from a wonderful and courageous lady. It gives others hope and encouragement that someday there will be a cure but in the meantime, they are progressing with positive results."

Here is the link to the video which I will also post with the links at the bottom of the blog.

http://today.msnbc.msn.com/id/26184891/vp/40470915#40470915

I'd be very interested in your reaction to Kathy's story, so, if you'd like, please post your comments here.

A Christmas Tradition continues

Terri and I will be flying up to the Twin Cities this weekend to attend the St. Olaf Christmas Festival with Andrew and Katie. It will be the 14th consecutive year that we have attended the festival beginning in 1997 when Elizabeth was a first year student at the school. We were fortunate to attend a total of 7 festivals from 1997 to 2003 when Elizabeth and/or Andrew was singing with one of the choral groups, most notably the St. Olaf Choir. For us it has always been the perfect way to usher in the Advent season as it reminds us of the real meaning of Christmas with the birth of our Savior and the joy and peace which He brings to us. Terri and I felt it was important to attend the festival this year as it will have special meaning for us with the joy we have felt with the birth of little Anna Evelyn and the peace He has brought to us as we have faced the challenges of my disease.

Peace and joy be to you and your family this Christmas season!

(NOTE: If you are interested in seeing the festival on TV, it is broadcast on many PBS stations around the country, most often on Christmas Eve around 11:00 P.M. Check your local listings for broadcast times. The festival is taped once every 4 years and then rebroadcast the following 3 years so the festival you see on TV will not necessarily be the one that we will see live.)

Return to Normalcy

Terri was off Thanksgiving week and I was feeling better so it was almost like a return to normalcy for us that week. We had our last raking party of the fall to finish up all of the outdoor work around the house and I want to thank everyone who came for the parties to help out Terri and me. From what I can tell a good time was had by all and the food was delicious! Brats and homemade German potato salad and taffy apple salad! Yum!

Bob and the bird feeders

Terri and Wes by the front door

Clear but cold

Terri and I spent the first part of the week up in MI, just relaxing and getting the house ready for the holidays and for winter. Enjoyed watching all the birds come to the feeders, including cardinals, blue jays, red-headed woodpeckers, and chickadees, and was glad to get some long-awaited electrical work done so the house will be a little brighter during the long dark winter months. Even enjoyed a walk on the beach, although it was a little on the cold and windy side. 

I was asked by the pastor of our MI church to speak about thankfulness at the Thanksgiving service while we were there. At first I was thrown by the request but the more I thought about it the more I thought I have much to be thankful for, especially when I think of the large and strong support group of family and friends that surround me. Thank you so much for all you have done, especially your good wishes and your prayers. They have meant so much to me during this challenging time of uncertainty.

Grandpa Bob and Anna

Grandmor and Anna

All smiles

Thanksgiving was a wonderful time filled with good food and good times--just like in past years. The whole family, which this year included our little granddaughter Anna with her mom and dad, Katie and Andrew, was here for a traditional dinner with all the fixings. Terri outdid herself! She and I had not seen Anna since September so we were thrilled to have her here for 3 days. She was a perfect little angel, happy to be with Grandmor and Grandpa Bob and Auntie Liz and Uncle Mike. She was all smiles and slept well at night. We must have worn her out with all we did. We all had fun watching football, Christmas shopping, picking out and putting up the Christmas tree, going out for brunch, and playing games. We have much to be thankful for.

I hope you all had a happy Thanksgiving as well.

MMRF Featured on the Today Show, Dec. 2

Thought you might be interested in this news:

The MMRF will be featured on NBC’s Today Show this Thursday morning, December 2!

This special segment, which includes Ann Curry’s up-close and personal interview with Founder and CEO, Kathy Giusti, will highlight the powerful progress the MMRF and its partners have made in bringing patients new, life-extending treatments and closing in on a cure. 

Multiple Myeloma Research Foundation (MMRF) is the organization which has made significant advances in the treatment of my disease. Their founder, I believe, is a multiple myeloma survivor. From information I have received, I believe they are on the verge of releasing some advances in the treatment of the disease. Let's hope and pray that that is true.

If you are unable to watch the segment when it is on, I think you should be able to track down the video clip at the Today Show website. I will post that information when it is available.

Good news

Got good news from the doctor last night. I'm doing so well that I will not need another round of chemo and should finish up around the 15th of December. That means the stem cell transplant, the heaviest part of this treatment plan, will occur just after the first of the year. If all continues so well, in 6 months, other than my monthly check-ins, this should all be a blur in my rear view mirror. Praise the Lord!

Transplant approved

Good news this week! I got word that my stem cell transplant has been approved by the insurance company. Not that I was ever in doubt that it would be, but it is always nice when one more hurdle is overcome. My stem cell transplant will be an autologous transplant which means they will be harvesting my own stem cells. It is the kind of transplant most commonly done for patients with multiple myeloma and has the least complications.

I'm about halfway through my chemotherapy treatments so the transplant will be here before I know it--most likely just after the first of the year. The hospital has already provided me with an extensive binder about the transplant, containing information on what to expect before, during, and after the process. I've skimmed through it and am impressed with the information provided. It looks like there is a pre-transplant period of 4 weeks when I am prepped for the transplant followed by a hospital stay of 2-3 weeks for the actual procedure. From what I understand they like to harvest approximately 40-50 million stem cells, enough for up to 5 transplants. Technology is certainly amazing!

It's probably time to dig into the binder in a little more detail in case there are any issues to discuss. High on my list is a room with a view of Lake Michigan while I am in the hospital. What better way to take my mind off this process. If you have any other suggestions on how to pass the time, please send them along.

The stem cell transplant is the key to my treatment. If all goes well, the cancer should go into remission following this procedure and I can get on to leading "a long and productive life" per the doctors. My guess is that it is probably the most grueling part of the treatment as well. I know the heaviest doses of chemo are administered prior to the actual transplant. I've learned to take this challenge one day at a time so I guess I will tackle the transplant when the time comes. I'll keep you posted as that day approaches.

Weekend Getaway

Went up to our Michigan home last weekend but who knew we would be running into lake-effect snow on the way. What a surprise! Fortunately arrived before the snowfall got heavier. Heard from some friends that there were white-out conditions on the road later on. We enjoyed the snowfall from the comfort of our home. Woke up to a winter wonderland. The weather and the temperature did improve and we were able to get lots done around the house in preparation for winter. Ended the weekend with a beautiful walk on the beach. Definitely a great getaway for Terri, Elizabeth, and me!

Support

Thanks to all of you for the emails, cards, phone calls, visits, meals, gifts, help, words of encouragement, and prayers. An illness like this can really cut you off from the rest of the world and it is so great to remain connected, and, in some cases, become reconnected in these ways. While this blog will hopefully let you know how I am doing, please don't hesitate to stay in touch in these other ways. A phone call is always welcome. It's great to hear how you are doing!

Terri and I also wanted to share a very practical article we recently read on helping out when something like this happens to a family. We have had so many offers of help, but we know how difficult and awkward it is for you to know how you can help as it is for us to tell you how you can help. Hopefully you will find this article useful. The article is entitled Care for the Caregiver. The link can be found at the bottom of the page under More Information but I am also providing it here:
http://www.guideposts.org/positive-thinking/ways-help-caregiver-during-difficult-time
Just copy and paste it into your browser and it should take you to the article.

Again, many thanks for all you have done for Terri and me. We truly appreciate your care and concern for us.

My personal advocate

Elizabeth, Terri, Michael, Marty, Bob, Sue, and Heather

Andrew, Katie, and Anna

For those of you who don't know, my daughter Elizabeth is a nurse in the Pediatric Intensive Care Unit at Children's Memorial Hospital which is associated with Northwestern where I am getting my treatments. With her medical knowledge and love of doing internet research, she has been a terrific advocate in working with the doctors. She has helped Terri and me navigate through this challenging and complex journey of symptoms, health providers, medications, side effects, treatment options, and proper care, and does not hesitate to go toe-to-toe with the doctors and health professionals to get the answers we need in order to make the most informed decisions each step of the way. In fact, I know on the days she cannot accompany me to the doctor that I better be sure I have all the answers to the questions we have or I'll face the third degree when we connect later on. The doctors have been most impressed with her knowledge and have welcomed her involvement in the process. I don't know what Terri and I would do if we did not have her checking up on us all along the way.

But I cannot forget the rest of the family who have been a blessing to me during this time. In addition to watching over me and making sure that I do what I should be doing during this time--and don't get into trouble, Terri has taken on additional responsibilities around the house to make sure that everything is running as smoothly as it can. We have faced this challenge as a team and her love and support and hard work have helped me cope with the myriad of issues we have faced. God certainly blessed with me with a very special angel on the day we were married.

Andrew and Katie keep tabs on us from Minnesota on a regular basis.  Just hearing about all that they are doing with little Anna or skyping with them so we can she how she is growing brighten our days. And we get regular emails with photos of all the events in her life. Walgreens is getting to know me quite well as it is one of the outings I make often to pick up the photos. And Terri's brag book is always up to date!

And I can't forget about Elizabeth's husband, Mike, whose good humor and cheer are always appreciated. He has a way of always keeping everything light.

And, finally, my siblings and their families have been great in so many ways including meals, videos, drives to appointments, consultations, and help with tasks around the house. 

(The pictures were taken at Multiple Myeloma Research Foundation 5K events in Chicago and the Twin Cities this fall. Elizabeth and my niece Heather organized a team in Chicago in about 2 weeks and were able to raise $2000. Andrew, Katie, and little Anna were able to walk in the event in Minnesota. A great time was had by all! Thanks to all of you who supported the event.)

What About Bob?

For a long time I've been meaning to start a blog as a way for family and friends to follow my progress during this challenging time in my life. I know that many of you are hesitant to call (although I do appreciate the phone calls) so hopefully you will find this helpful. Please don't hesitate to post your own comments as I would love to hear from you as well.

For those of you who might not know the whole story, this has been a rather eventful year for my family and me. I was struggling with lower back pain last spring and was getting muscle manipulations throughout the summer for relief. However, in late August, the back pain came back more severely than before so I arranged with my doctor to get an MRI. It showed a mass compressing my spinal cord so I was hospitalized and had emergency surgery to remove a tumor.  I was diagnosed with multiple myeloma, a cancer of the blood plasma cells that affects the bones. The good news is that it was caught very early--I am a a low stage 1--and the prognosis for people with multiple myeloma is very good.  I should be able to lead a "long and productive life," as one doctor said, once the initial treatments are complete. If you are interested in learning more about multiple myeloma, I have attached a link to the Multiple Myeloma Research Foundation on my blog.

One of the symptoms of multiple myeloma is that it weakens the bones causing lesions and small compression fractures in the spine that produce back pain. That has been my biggest challenge during this time.  Since the initial surgery, I had one more hospitalization in early October for a procedure to relieve the pain but find that the back pain still comes and goes with no rhyme or reason. Just when I think I have it licked, it comes back! This is one of those weeks. Pain medications, however, can do marvelous things so I am able to control the pain with them.

I have also begun chemotherapy treatments at Northwestern Hospital one day a week and those are going well. I have had very few, if any, side effects, and actually feel quite good on the day after the treatment. Those will continue for about another 6-10 weeks.  At that point I will prepare for a stem cell transplant of my own stem cells which will require a hospital stay of 2-3 weeks. After that, the cancer should be in remission and I should be able to get back to a more normal life.

This has been an eventful year for Terri and me in another much happier way. Our first grandchild, Anna Evelyn Douglass, was born to Andrew and Katie in the Twin Cities on June 16. She is a beautiful little girl whom we just treasure. The picture above was taken at her christening--just 3 weeks after my initial diagnosis and surgery. I cannot tell you how thrilled I was when the doctor said I could make the trip.

We skype with Andrew and Katie often so we have been able to see little Anna grow. Andrew and Katie are also good about sending us pictures so we can keep our grandparents' brag book up to date. Terri is Grandmor (a variation of the Swedish) and I am Grandpa Bob. We are thrilled that they will be down for Thanksgiving and can hardly wait. We will have much to be thankful for on that day.