Getting ready to walk along the beautiful Chicago lake shore

Terri, Elizabeth, and Mike just before the race

Terri and I stop for some water.

Watch out, bicyclists and runners!

Stopping with Daisy to view Buckingham Fountain

What a beautiful view out to the lake!

Daisy and Mike take a rest.

Celebrating with our medals

Dr. Mehta and me at the finish

I'm on the top right.

Last Sunday I participated in the Cancer Survivor's Walk for the Lurie Cancer Center of Northwestern Memorial Hospital. (This is not the big fundraising walk we do in the fall for the Multiple Myeloma Research Foundation, but one run by the hospital that has been treating me.)  Terri, Elizabeth, Mike, and their dog Daisy joined me for a beautiful day along the lake. I am proud to say that I was able to walk the entire 3 miles with the aid of my cane and a couple rests along the way. I have had to replace one of my leg braces because I actually cracked it from so much wear over the year and am still trying to break in the new one.
One highlight was seeing my oncologist, Dr. Mehta, who sought me out when I was finishing the race. He is a great person in so many ways--not only a very skilled doctor in the forefront of treatments for my specific cancer, but very caring and concerned not only about me but also about Terri and my whole family. He is a big part of why Terri and I are where we are today, really enjoying life.

Medical update

Just to let you know that I recovered from my fall quite quickly and am back to walking without my cane again. Leg braces only! Looking to get together with my physical therapist for a follow-up evaluation to assess my gait (walk) and lower back to see that all is ok. It's been quite a long but successful trip since I was released from the Rehabilitation Institute just a little over a year ago.

In the meantime I have begun taking the medication to keep my cancer in remission. Unfortunately a couple of the side effects are neuropathy and blurred vision, both of which have been affecting me to a greater extent lately. So I've had to get a new prescription for my eyeglasses and have been dealing with more tingling and pain in my feet and calves. It's more disappointing than anything else since I had been making such great progress in controlling my neuropathy. I hope the impact will be minimal so that I can continue living my life as I have over the past couple months without increasing any of my pain medications which have their own set of side effects. And side effects of any kind can be a real pain! Wish me luck or say a little prayer that the effects will be minimal. Cheers!

A must-read article

I'm attaching a link to a must-read article written by Elizabeth in her blog "The Singing Nurse" should your family ever be faced with a situation similar to ours when I ended up in the ICU. (And who can know when that might ever happen?) She shares her nursing expertise, personal experience, and compassion in providing practical and reassuring tips for surviving that experience when you have a loved one in the ICU. Please share with other family and friends. Peace.

Navigating the ICU

Oops

Fell for the first time since I began rehabilitation just about a year ago. What a bummer! And, of course, why is it always when we do something foolish? I was just trying to let the dog out onto the deck in Michigan when I got caught on the leg of my pajama pants and tumbled into the porch. Fortunately, all I did was jam the toes on my left foot (my good one) and skinned my knee. One of the toes is now painful and discolored so I don't get around as easily as I have lately. I'm using my cane more and moving very slowly. Reminds me of my first few weeks at home a year ago. What a pain! Hopefully this will heal up quickly.  I'm happy I have a week ahead with few mobile tasks so I can recuperate. More later on some great experiences over the past months, including the celebration of my first birthday since hospitalization.

Celebrate!

Happy 1st Birthday!

Well, it's almost been a year since my stem cell transplant on February 1, 2011, the same day that Chicago was hit by the largest blizzard in recent years. I remember a very ordinary medical procedure becoming a very moving experience with the blessing of the stem cells by the hospital chaplain in a circle of believers that included my very special nurse--Audrey, the chaplain, the medical technician, Terri, and me. I felt truly blessed when Audrey told me that she had prayed for me the night before. Doubly blessed that day. In many ways it was the beginning of my new life and I learned while going through the preparation for the procedure that many patients think of it as their new birthday.

Last night, Terri and I went out to dinner at Red Lobster with Elizabeth and Michael and ended up celebrating my new birthday--or, at least, Michael told our server that we were when the server asked if there was any special occasion for our night out. And, to our surprise, the server and staff serenaded us with a rousing chorus of Happy Birthday with a candle in my Key Lime pie and a menu signed by all the servers. What could have been more special? Hope you like the picture taken last night. Not sure why my cheeks look so rosy!

Thanks, Elizabeth and Michael, for reminding us of that special blessed time.

And thank you to all of you who have prayed and supported us in so many ways over the past year.

Peace to you all.

A Great Accomplishment!

Just received this news from the Multiple Myeloma Research Foundation (MMRF) which we have been supporting so vigorously over the past year. If I read it correctly, patients with multiple myeloma will be able to inject the drug themselves rather than having it done intravenously and that the possibility of peripheral neuropathy (from which I suffer in my legs) is less likely to occur. While I do not know if my neuropathy was caused by my chemotherapy treatments, my prolonged time in the ICU, or both, this is certainly good news possibly for me but certainly for all newly diagnosed patients.
 
The MMRF is pleased to announce that the FDA approved the subcutaneous administration of Velcade, one of the most important and effective treatments available for multiple myeloma. A large, international clinical trial found that the subcutaneous administration was comparable in terms of effectiveness to the standard IV administration, but importantly, was associated with a significantly lower incidence of peripheral neuropathy.
The MMRF applauds Millennium for bringing this new form of Velcade to patients and all of the clinicians and patients who participated in the clinical trial.

Thanks so much to those of you who supported our efforts to raise monies for MMRF. This is a tangible result of that support to bring about a change.

Finally a snowy weekend

Thought I would share a few photos of our weekend in MI. What a great time!

The welcome to the stuga (summer house) over the door!

Finally

a beautiful snowfall

Ready with our winter gear.

Terri on the trail

Even Wes likes the snow.

My ski poles are great for hiking in the snow.

Another accomplishment

Or, as Terri says, what a difference a year makes! Spent a long weekend up at our home in Michigan. Got about 5 inches of snow on Friday--absolutely beautiful--so on Saturday under crystal clear blue skies we started out with our snowshoes. Lo and behold, I was easily able to snowshoe the entire trail in the woods around our home. In fact, I said to Terri that it was the first time I was not aware of the neuropathy in my legs while involved in an activity! Possibly because I had to walk the same way I do around the house without my braces --like a duck! Quack! Quack, but I'll take it!

Last test!

Today I had a lumbar puncture, also known as a spinal tap, to see if anything more can be done for the neuropathy in my legs. Doctors have said that it is not likely that it will, but they don't want to leave any stone unturned. We'll see. It is the second time that I have had the test (the first one was unsuccessful) and was not as painful as I have heard it can be. Had to rest 2 hours before they would release me and I need to be on the look out for cerebral headaches over the next couple days. Hopefully that will not be the case. Drinking caffeine helps. Who knew? Bring on the classic Mountain Dew! Lab results will not be known for a couple weeks as they are running a number of studies on the samples so now is the waiting time.

In the meantime I continue to enjoy life with the family. Had a great time with Terri, Elizabeth, and Andrew at the annual Cubs Convention in downtown Chicago over the weekend. With new management, it was almost like the second coming. Hopefully they will  have a better year than last year. Terri and I also planning to spend a little more time in Michigan. And we are seeing more movies than we have in the last 10 years. War Horse is a must see!

What fun!

Anna going for an autumn ride with Grandpa Bob

Daisy and Wesley playing on the beach

Anna rolling out gingerbread boys with Grandmor in Minnesota

Grandpa Bob and Anna reading in December

Anna looking for baby Jesus on Christmas Eve

Grandmor and Anna looking at the tree

Elizabeth, Mike, and Bob enjoying Swedish smorgasbord on Christmas Eve

Anna and Elizabeth opening a gift on Christmas Eve

Anna opening gifts on Christmas morning

Andrew, Katie, and Anna caroling with the extended Douglass family

Wrapping Up the Year

Well, I didn't keep my promise to blog more last fall so I have made it a New Year's resolution to do so. And we all know how those go–so let's hope I am in the small minority who keep them! I guess it also means that I did not have much to report and I would say that is the case. My cancer remains in remission :) and the neuropathy in my calves and feet is about the same with nothing uncovered after all the tests for the neurologist. :( Please continue to pray that my cancer will remain in remission and that I will be in the small minority who eventually come close to making a full recovery from the neuropathy.

In late October I caught a very nasty cold which morphed into flu (despite a flu shot) and hung around for almost the entire month of November. (One of the downsides of a compromised immune system.) Other than that things went well as fall moved into winter. Our week with Anna in October was lots of fun and she really got to know Grandmor and Grandpa Bob.  We also had a chance to watch her in early December when we were in MN for the St. Olaf Christmas Festival. Making gingerbread cookies with Grandmor and buying a family Christmas tree were highlights of that time. Terri and I also spent many long weekends enjoying the fall up in MI. Our dog Wesley got to know Liz and Mike's dog Daisy and the two of them had fun wrestling around the house and running up and down the beach. 

All in all, Christmas was a joyful time. Terri and I had decorated the house to the hilt since the whole family would be here on the 24th and 25th. It was great to see it so colorful and bright after Christmas 2010 which was more subdued given my impending stay at the hospital for my stem cell transplant. And it was fun to see Anna enjoy all the decorations, pointing out the Advent calendar, the elf on the shelf, and Santa with a ho, ho, ho. (Actually the elf on the shelf was a tradition in our home long before it became so popular. Just wish we had the royalties from all of the merchandising.)  Anna was especially taken with the baby Jesus in our nativity and carried him around the house.  She also loved passing out the gifts on Christmas Eve. Of course, we all had received our greatest Christmas gift much earlier in the year–the gift of life.

Enjoy the pictures!