The Latest News

On Monday, June 12, I had a series of tests to determine the success of the last series of therapies. Unfortunately, the results of one test were unreadable so that test will be redone this Thursday, June 22. Terri and I will know more in detail once my doctor has read the results of that test. However, he does want to begin a maintenance therapy to occur once a day every two weeks to improve the success of the therapies. That therapy will begin the week before the 4th of July. I will keep you posted on any new information.

In the meantime we are keeping very busy with many activities including spending time with our grandchildren, especially celebrating Norah's, Anna's and Zachary's June birthdays on the 8th, 16th, and 24th. We have been in Minnesota for the last 4 days and will head home to Park Ridge tomorrow so we can sing Happy Birthday to Zachary this weekend. What fun!

Our best to you. Please keep us in your wishes and prayers. Thanks.

Unprecedented Success Revealed in Treating Multiple Myeloma with Gene Therapy

Terri and I got news of unbelievable results in the testing of gene therapy (using the patient's own genes) to combat mutliple myeloma. We are hoping and praying that they can fast track the follow-up testing through the pipeline. I have attached a link to the article in the Sun Times explaining the disease as well as the gene therapy tested which had an almost 100% positive response which is unheard of. Click on the link to see the article. And, if you are so inclined, please keep hoping and praying with us that it continues to have such positive results.

http://chicago.suntimes.com/news/gene-therapy-to-fight-blood-cancer-finds-unprecedented-success/

A Quick Update

Monday, May 22, I had an early morning visit to the doctor and had the picc line removed. Hooray! No need for additional blood draws from home health care. My immune system is recovering sufficiently. We also discussed next steps which include:
May 31--A short infusion (3 hours) at the clinic to boost my immune system.
June 12--Reimaging of my entire body to determine the success of the 2 18-day treatments.

So it's MORE time of sitting on pins and needles (or walking the tightrope) until Terri and I know where I stand. Overall, I feel good except for the fatigue, so I am taking that as a positive sign. Please pray with us that it is so.
 

Monday was ALSO our 41st wedding anniversary so we had the opportunity to go out to brunch downtown. Back home our kids surprised us with the delivery of a beautiful bouquet of flowers. Terri and I celebrated again later in the day with dinner at Hackney's, a long-time favorite in Glenview. We ordered a small brick of onion rings. I had split pea soup, French fried shrimp, homemade fries, and coleslaw. We split homemade peach pie a la mode. It was all delicious. Ambitious on my part, but it was our anniversary! I was able to eat it ALL with no ill effects of any kind. Hallelujah!

Heading to Michigan for Memorial Day weekend. Can't wait.

I'm Home

Celebrating at DQ

Hooray!! The doctor released me yesterday (Thursday) after my blood cell counts recovered enough to go home. So happy to leave after 17 days of passing the time in my room except for occasional walks around the corridors. It was such a beautiful day in Chicago, too, warm and sunny. Terri had the joyful idea to stop at Dairy Queen for chocolate dipped cones on the way home. No better way to celebrate.
I still have a picc-line in so that the home health care nurse can do blood draws over the next couple weeks to see that my counts continue to improve. I will see the doctor on Monday as we begin to put together next steps in my care. It will be awhile before we know exactly how successful this treatment is, but, overall, I am feeling well. No major aches, pains, or complaints. In the meantime, I am just enjoying being at home with the freedom to roam around the house and check the out of doors even if the weather took a nasty turn for the worse overnight becoming unseasonably cold, windy, and rainy.
Thank you to everyone for your good wishes, great ideas to pass the time--audiobook apps, online scrabble, podcasts, puzzles, Legos, a great new historical thriller, and more--and your prayers.

My Lego creation

It goes without saying that Terri's daily visits (with delicious homemade lunches) are what pulled me through. I think she logged almost 500 miles in travel time alone. Nice to be able to spend that time together at home now. I'll keep you posted as things happen. Your continued prayers for positive results are, as always, so welcome and so powerful.

Infusion Complete

Quality Family Time at the Hospital

Yesterday (Sunday) was a special day--I parted ways with my IV pole. The infusion was complete! What a delight after pulling it around for 4 days. Now I just need to wait and let the chemo do it's thing. My immune system will crash and then rebuild itself over the next week and a half. A period of waiting on my part with some lows and highs in how I feel. I am hoping more highs than lows but whatever it takes to get to the end with the hopes that it is successful in controlling the lesions in my bones.
It was a wonderful weekend as Andrew flew down from Minnesota to spend some time with Terri and me in the hospital. And Elizabeth was able to come over from her job as a transport nurse at Lurie's Children's Hospital so we could all be together for some quality family time as of old. What fun!

A New Room

Two days down, two days to go for the chemo infusion! It shoud finish up sometime on Sunday. Then it will be time for the crash of my immune system and its recovery--about another 14 days of waiting time until it has stabilized and I can leave the hospital.

 Everything is proceeding as normal except I was moved to another room, due to hospital policy. Same view just a lot more constricted. One plus is that the smaller room is much more functional when I am hooked up to the IV pole. Much less  unplugging of the cord and tying up the lines to get something I need. But I do miss the windows, the sunlight, and the broader view they provide. Otherwise no side effects yet from the chemo, appetite good, sleeping well, medical staff excellent.

Son Andrew is arriving today from Minnesota for the weekend and daughter Elizabeth stops by before and/or after work as a transport nurse at Lurie's Children's Hospital next door. It's always good to see them! Both bring gifts from the grandkids which is always fun and heartwarming, too. And, of course, I am always glad to see Terri who comes down each day to see me, play gin rummy or solitaire, and share some meals together. Their support and yours are what keep me pushing forward each day to get to a place where I can enjoy a relatively normal life again. Even though I don't have a chance to respond to your replies and good wishes (a lot goes on in a hospital day with many people in and out), I do enjoy getting them. Please don't hesitate to respond.

Day 1 May 3, 2017

Getting ready to go another round

Terri, my companion on this journey

Just wanted to let you know where things stand as far as my treatments go. As you may recall, the doctor was happy enough with the results of the last infusion in March that he recommended a 2nd round to see if we could really get the multiple myeloma under control. I was supposed to reenter the hospital on April 25, but because I came down with an upper respiratory infection, it was delayed until yesterday, May 2. All went smoothly with the preliminary procedures and I began the 4-day (96 hour) infusion just a short time ago. As before, I will remain in the hospital after the infusion ends while my immune system rebuilds itself --approximately another 2 weeks or so.
I am lucky enough to have another corner room with a beautiful view of the surrounding neighborhood, although without the iconic landmarks of the last room. This time my room looks  to the east and south of the hospital, but my view of the lake is obstructed by a number of buildings. I can just see the horizon above the tops of the buildings. But there is more activity in this part of the neighborhood to keep me occupied, including the construction of a new high rise just down the street. And everything looks sparkling on a sunny morning--something we have not seen for awhile here in Chicago.
Thanks to those of you who sent ideas on how to pass the time. They all look quite interesting and I hope to explore them as the days go by if my stamina holds. And thanks to all of you for your encouragement--in thought, word, and deed; in prayers, good wishes, and encouraging words.  Though I have said it many times, I hope it does not get old. Your love and support has uplifted us and gotten us to this point. Terri and I could not have done it without you. I'll keep you posted as the treatment proceeds. Please keep us in your prayers for strength and patience and, in the end, for even  better results in fighting this disease.

What's Next?

Checking out the MI beach on a beautiful sunny day

Celebrating my birthday with my boys at Red Lobster

Sorry I have not blogged much in recent weeks but there is not much to report as I have been recuperating at home and slowly venturing out as my immune system has improved since I came home on March 12. One of my first times out was to celebrate my 66th birthday on March 29th. Oldest grandson Drew (in the background above) was sure we were going to Red Lobster because Grandpa knows "that's my favorite restaurant" so off we went. My birthday was, in fact, quite memorable because it also included homemade waffles from Terri for breakfast, a Subway lunch brought in by brother Dave, birthday calls from my siblings, lots of birthday cards filled with good wishes, and a chance to Skype with our son and granddaughters in Minnesota. What a grand day.

Terri and I also had a chance to drive up to our stuga in Michigan for a little R&R. It was great to get away and enjoy the outdoors as you can see above. Unfortunately we were having some issues at the house and, in the course of checking out the sump pump in the crawl space, I fell down the stairs and fractured one rib in my back. Nothing to do for it but to let it heal, but the pain hasn't helped my recovery. I move quite gingerly these days, but the pain is slowly lessening.

Right now, I am at a Yay...Boo time in my life, as Sister Sue says. After visiting my doctor, I had an MRI done of my pelvis as an indicator of how effective the treatment was overall. It showed that, while not a complete remission, it had shrunk the lesions and no new ones appeared. That is definitely a Yay event. The Boo event is that the doctor wants me to enter the hospital shortly to run the treatment again (all 18 days of it) to see if we can improve my condition and perhaps even reach a complete remission. So, while I am enthusiastic about the outcome, I am not real happy about going through the procedure and recovery time. I'll be entering the hospital on April 25. Long hospital stays are definitely monotonous and no fun even if the view from the room is great.

Please keep both Terri and me in your prayers that the results of the 2nd treatment will greatly arrest the development of the multiple myeloma. Pray also for patience and strength for both of us as we go through the process again. (It's hard to fill all those days in the hospital, especially when the fatigue sets in. Any ideas are greatly appreciated!)

Thank you all for your get-well cards, your notes of encouragement and best wishes, and your prayers. Knowing that so many prayers are being offered up for us and receiving both serious and humorous good wishes are so uplifting to both of us and can certainly help to set the tone for those long days.

And for those who are celebrating: A Joyous Easter or a Happy Passover!

As for Terri and me: Christ is risen! He is risen indeed!

At Home

I finally was released on Sunday and am very glad to be home, enjoying another beautiful view out my window, although I'm not sure how thrilled I am about the snow outside. But, with spring coming, I know it will be gone soon. I am amazed at how exhausted I am now that I am home. My goal is just to rest and recuperate to continue to build up my immune system. The more sleeping I do the quicker my white blood cells will come back. And, as always seems to be the case when I get home, my hair is starting to fall out. And just as all my hair had come back from my last treatment. Oh well! I'll be wearing my Cubs World Series cap now that baseball season is soon to begin. Go Cubs!!  And I will see the doctor in about 2 weeks to decide what the next steps will be in my treatment.

On the Rebound/Saturday

Just wanted to send a quick update. I hit rock bottom last Wednesday with my white blood cell count going to just about zero and my immune system wiped out. I felt light headed and extremely fatigued with lots of little issues generally making me feel crummy. I had been getting daily shots to help boost my white blood cells and on Thursday I received a blood transfusion. As a result, my white blood cell count improved significantly on Friday. My appetite has returned and I feel like doing things again. Enjoyed a couple Division 3 basketball games last night on YouTube since Hope College and Augustana College were in the playoffs. Augustana, Terri's alma mater, won and moves on. Hope, my school, was eliminated. 😟 It would have been nice to see them play off against each other.

In the meantime, I continue to enjoy watching the beautiful sunny weather and all the activity in the park and the harbor and on the streets below. I do hear from Terri and the nurses, however, that it is unusually cold for Chicago right now. Guess I don't have to worry about that!   😃

Hopefully, I'll be heading home early next week.

A view Saturday morning from the hospital

Day 11 Update

Keeping hydrated with my Batman water bottle from Drew and Zachary while enjoying photo cards  from Anna, Norah, and Greta as well as good wishes from so many. 

 

 

 

 

 

 

 

 

Treatment is going as expected with counts dropping. I am feeling more fatigued as a result. Most of the treatment ends today so now it is just a waiting game while dealing with all of the little annoying side effects of any treatment in the hospital. I keep busy with reading, daily devotions, some TV, youTube videos of old sitcoms, word searches, and watching the world go by. Terri and I have relearned how to play gin rummy and solitaire which are great diversions.

Day 9 Waiting

Watching the ship cruise the harbor

Hooray! The chemo infusion finished up late on Tuesday after 4 days of being plugged in to the wall with a medical pole following me around. It is wonderful not to be hooked up 24/7. Now it's just time to wait and see how I respond to the treatment as my immune system rebuilds itself. The doctor wants to keep me in the hospital for at least another week to 10 days to monitor my condition. We'll see how that goes and how I feel. In the meantime, it is a beautiful day, if cold, with the sun shining so I can continue to enjoy the wonderful view from my room. Lake Michigan is fascinating with the change in colors as the sun goes in and out of the clouds. And I just saw the first luncheon cruise ship of the season come around Navy Pier. In March!!  Spring MUST be coming!

The View from My Room on the 14th Floor

The view from my room thanks to a wonderful nurse who moved me from the dungeon in back when this room opened up over the weekend. Full size windows on 2 sides with views of Lake Michigan, the Chicago Water Tower and Water Tower Place, and the Museum o Modern Art (respectively in the photos above). It certainly brightens my day to look out and see all that is going on. The weather is so nice I keep expecting some boats to come cruising through the harbor but no such luck. All in all, a wonderful place to be if I have to go through such a lengthy stay.

An Update for 2017

It has been awhile since I have blogged. Not sure exactly why. I'd  like to say that it has been because I have been living a life apart from being a cancer survivor as many of you know, but also, as many of you also know, I have been challenged by the multiple myeloma and required an ever changing series of treatments to keep it under control. Some required hospital stays with long recuperations followed by maintenance treatments that occurred weekly, bi-weekly, or, if lucky, monthly. Some of those days would require 10-12 hours in the clinic.
I am writing you now because my last series of treatments was not as effective as the doctor would have liked so I am now in the hospital again for a 96-hour (4 day) infusion of an 8 drug cocktail to see if we can knock it back. I am feeling fine now and have a beautiful room which overlooks both Lake Michigan and Michigan Avenue. The view today is gorgeous. Many thanks to my nurse who knew the room was opening up and moved me down here from my room with no view.
The infusion will end Tuesday, but then my counts will fall and the crash begins around the end of the week when fatigue and other side effects will set in. The doctor wants to keep me for at least another week and a half or so until my counts (and my immune system) come back up. That cycle is the most difficult time and I do not look forward to it.
Terri comes to visit everyday and Elizabeth stops by before/after her shifts as she is a transport nurse for Lurie Children's hospital just across the street. I enjoy those times together as well as calls from Andrew checking up on me. Both Andrew and Elizabeth, as well as Katie and Mike, share tales of our grandkids which I love.
I'll try to keep you posted as the days progress. In the meantime, please keep both Terri and me in your prayers and your thoughts. Feel free to share our story with others in your church or social groups. We know how miraculous prayers can be working together. I would love to hear from you via  email or text although I can't always assure you that I will respond especially as my strength fades. Know I will appreciate and enjoy them very much.
As always thanks for your care, love, and support for both of us. It means so much.

Bob and Terri

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.