Pet Scan Results from July 1

I have gotten the results from the PET scans done last week and preliminary results are GOOD. They indicate that my current course of chemotherapy is controlling, and in some cases improving, the multiple myeloma. I'll know more when I meet with my doctor early in August. Thanks to all of you for your prayers and good wishes. If you are so inclined, please continue to pray that it be so . Praise be to God!

Latest News

I am still feeling okay. After a week in Michigan with my siblings and their families I realize how much further I need to go to build up my strength and stamina, but I am happy that I am able to do most things I would like to do if with a little less vigor than before. We had a wonderful time and the weather was perfect for being on the beach, regardless of age.

I had my monthly chemo treatment just before I came and I also had my semi-annual PET scans done at the same time.  Needless to say, it was a very long day so it was great I was taking off for Michigan the next day. The PET scans are the best indication of how I am doing with this current course of treatment so I am waiting to hear from Dr. Mehta for the results.

I am still dealing with low white blood cell counts so I fight different kinds of infections from time to time. Hopefully we can find the right combination of medications in the chemo treatment to bring my counts back to the normal range.Right now I am trying to clear up some skin infections.

In the meantime, Terri and I are enjoying the summer as much as we can. It is great for us to get away to our stuga in Michigan for a little rest, relaxation, and fun. Hoping that the weather continues to improve as we will have our whole family up here the last week in July. Time with the 5 little ones on the beach is lots of fun.

Please hope and pray that the results of my PET scans show that the multiple myeloma is contained and I can continue doing what I am doing. Thank you.

Chemotherapy update

I had my monthly chemotherapy infusion yesterday. Unfortunately because my white blood cell count was low making me more susceptible to infections, it was decided not to give me one part of the cocktail which can have a negative effect on those cells. My oral chemo pill can also have a similar effect so we are working to find just the right combination so that my white blood cells can remain in the normal range. So please understand if I don't shake your hand when we meet. Just my way of trying to avoid any future infections.

Other than that, everything went smoothly and I am resting comfortably at home today. Even drove myself to get a haircut. Biggest problem is getting the furnace fixed which went out last night. Glad the weather is warming up although it was a little cold sleeping last night. Had to get out the winter comforter.

Tom Brokaw and A Lucky Life Interrupted

I hope you had a chance to watch Tom Brokaw's excellent special on his journey with multiple myeloma. While MM is a very personal type of cancer, there are many similarities which I recalled as I watched the show. I have been fortunate not to experience the extreme pain that Tom did early in his diagnosis for which I am most thankful. However, there were many things I could empathize with Tom about, including the extreme fatigue, multiple bone fractures, constant back pain, chemotherapy and radiation treatments that bring one down, the danger of catching the ordinary flu and spending 2-3 days in the hospital, and the loss of height and weight among others. (I have gone from 5"10" to 5"6" and now look up at most of the guys I know and my weight is slowly coming back after hitting bottom at 145 lbs.)  I am sure that Terri and Elizabeth could add other similarities.

There are differences too. While Tom was able to achieve a complete remission through chemotherapy, I have undergone 2 stem cell transplants, one of which put me in the ICU for 6 weeks in 2011 (the result of catching the H1N1 virus--not the stem cell transplant) as many of you will recall. That stem cell transplant brought about a complete remission. My most recent stem cell transplant in 2014 brought about a near remission and I am on chemotherapy to keep the disease in check. It has been a long road back from that one. The medications Tom is taking no longer work for me so I am on a regimen of some of the latest drugs available. Pray that they will work.

I am glad that Kathy Giusti, founder of the Multiple Myeloma Research Foundation, was featured on the show. Her organization has done much to advance research on the disease and we support it every fall when their Race to Research comes to Chicago and the Twin Cities. We hope you will support us again as well.

Most importantly, Tom stressed the need for family and friends to help break down the isolation barrier that surrounds a person with MM or any other cancer (and his caregiver). How fortunate I have been in that area. I have been so blessed to have an unbelievable caregiver in Terri. She has walked every step of this journey with me as she has taken care of me and I need to make sure she takes care of herself and that we both find time for rest and relaxation. Elizabeth has been a wonderful medical advocate, translating everything that has happened and reminding me of the many things I have forgotten. Andrew, Mike, Katie, and my siblings have offered wonderful support, as has the rest of the family and our friends And the grandchildren born during this journey have been a great joy!

Tom did say how it is important to take life one day at a time--a lesson we learned a long time ago. What he did not mention is the power of the prayer of others who are with us on this journey. We know that God is at work in our lives and we are so thankful to all of you who have offered words of support and especially prayers on our behalf. Thank you.

If you haven't seen the show, here is a link to it online.

Tom Brokaw A Lucky Life Interrupted

Lung Biopsy

Today I had a lung biopsy to check out something that showed up in a CT scan of my left lung during my last stay in the hospital in March. The biopsy went smoothly. We are just waiting for the results which won't be known until next week. We don't think it is anything serious and are praying that we will get a clean report. We would appreciate your prayers too.

Spring is Finally Here, Summer is Coming

It's been awhile since I have blogged. I just want to let you know that I am doing okay. I am still having problems with bladder infections (UTIs), but I have also been able to begin the maintenance therapy for my multiple myeloma on a monthly basis. It's nice now not to have to go to the clinic so often. I did contract another gastrointestinal virus in March that required 2 trips to the emergency room and a 4 day stay in the hospital, primarily for dehydration. That was not a happy time but I am much better now. I'm happy to say that my strength and stamina have slowly been improving and my appetite has come back which is GREAT!

On the plus side, Terri and I were able to get away to Florida for a few days in February although the weather was cool and overcast most of the time. We also took all of the grandkids to Great Wolf Lodge indoor water park in the Wisconsin Dells for a weekend in March and I felt good enough to celebrate nephew Wylie's wedding to Kristen Redman at the end of the month. What great times! And we were finally able to get up to the stuga in Michigan for a long weekend just this past week. Time to get it and the family summer house ready for summer. It felt good to do so and to connect with all of our friends up there. If you are so inclined, please pray that my health continues to improve and that we will all be able to enjoy a glorious spring and summer.

Infection Update

I am still battling the same bladder infection which has been plaguing my recovery for the past 3 months. It's a very tenacious one which always comes back within a few days of treatment with an antibiotic and a test which shows the infection is gone. And lately it has produced an unusual symptom--temperature spikes that come early in the evening and can be quite high. That has been frightening. Fortunately the spikes have come down by late evening. Last week my oncologist put me on an exceedingly powerful antibiotic which he is convinced will eliminate the infection. One good sign is that it appears to have eliminated the temperature spikes. Let's hope that continues. Please pray with us that this medicine will work and eliminate the infection permanently.  Hopefully my strength and energy and appetite (along with my weight) will return.

Battling another infection

Unfortunately, Terri and I will not be going to our cabin in Michigan this weekend because I am fighting a troublesome bladder infection that just doesn't seem to go away. I need to stay close to home in case anything should change. That's really disappointing as we were looking forward to a Super Bowl party with our friends from Harbert Community Church. Of course, an approaching weekend winter storm which will probably drop several inches on the area would also have kept us in the city. Snowstorm driving is not a favorite of Terri's. Perhaps EVERYTHING will clear up by next weekend so we can get away. I hope so.

Finally--The Results

I was finally able to see my oncologist last week to receive the test results from my stem cell transplant. They show a "very good near remission" which, while not perfect, is certainly good news. It means that most of the disease was eradicated by the transplant but that there are still traces of it in various bones. He is confident that a monthly chemotherapy infusion and a daily oral pill will control the disease and possibly improve my condition. We will continue to pray for that outcome and ask that you do too.

Overall I am feeling good and glad that I will only need to go down to the clinic once a month rather than on a more frequent basis. It will finally give me the opportunity to fill my time with more interesting things to do. Since Terri and I had not been to our cottage at the lake since September, we were very happy to go last weekend for a restful time--to have dinner and brunch with friends and to see all of our friends at Harbert Community Church. What a wonderful community of believers--as are those of you who have been hoping and praying for us during this challenging time in our lives. Thank you so much.

Another Illness and Delay

As you are probably aware, I was supposed to meet with my oncologist to get the test results from my stem cell transplant on Friday the 9th which I had wanted to share with you this weekend. Unfortunately, on Wednesday I came down with a gastrointestinal virus. By Thursday I was so dehydrated my daughter Elizabeth took me to the ER at Northwestern Hospital where I was admitted overnight for fluids and observation. I was released yesterday, the 9th, and have been resting at home. Of course, my appointment with my oncologist was cancelled so Terri and I are waiting to reschedule it. We are terribly disappointed and do hope that we can reschedule it quickly so we can get the results and move forward with any treatments needed. Pray for patience for us as we have been waiting for this day for a long time and are very anxious to get the news.

New Year's Update

I apologize for not updating my blog in awhile, but Terri and I have been busy with Advent and Christmas preparations and celebrations which I think is a GOOD thing. It was great to be busy around the house and see it transformed during the holiday season. We did see the doctor a few times during the month and his initial review of the tests from my stem cell transplant indicate that while the multiple myeloma (MM) is unfortunately not in complete remission, it has shown marked improvement. As a result, he does want to start me on a monthly maintenance therapy and a new daily oral medication to help clear it up even more. Terri and I are praying that this change will be keep the MM under control.
Unfortunately, I did come down with a cold/flu which prevented me from beginning the monthly maintenance yet. Twice we had to cancel the treatment over the holiday season. I had had a flu shot earlier and the doctor did put me on tamiflu to clear up the infection. I am better now so we are scheduled to begin the treatment next Friday, January 9, when we will also meet with the doctor to get ALL the results of the tests and know exactly where we stand. We do ask that you continue to pray that the news will be good and that the new therapy and medication will work.
I was fortunate to get permission from the doctor to fly to Minnesota the weekend of December 13-14 for our granddaughter, Greta Margaret Douglass's christening. And we had a wonderful time celebrating Christmas Eve and Christmas Day with daughter Elizabeth and her family (her son Drew is in the photo in the prior blog entry on Christmas Eve) and with the whole family in the days following Christmas when Andrew and his family came to town from the Twin Cities.
Now it is back to the business at hand of getting this disease in line. Pray that 2015 will bring that good news to us. Thank you for that and for your prayers, good wishes, cards, care and concern for both of us during this past year.