We’re going to win here and that’s the end of the story

It’s been well over a year since the last update to this blog.  In many ways, no news has been good news.  While there have been some ups and downs with George’s health, it has generally been good.  The doctors and staff at Northwestern Memorial deserve credit for maintaining his health such that he’s been able to go back to work, move into a new condo, sail around the British Virgin Islands and even squeeze in a few fishing trips since the last update.

Around late June, George developed a serious pneumonia and was immobilized for over a week.  During this time, his muscles atrophied leaving him quite weak.  However, he’s experiencing virtually no pain.  He’ll soon be undergoing physical rehabilitation at the Rehabilitation Institute of Chicago Hospital.  He’s hoping to be watching the Cubbies continue to win, from the comfort of home, by Labor Day. 

George, and family, appreciate all the, prayers, cards and support received.  Per the policy of the hospital, please do not send flowers.

P.S. Even though George quit smoking over twenty five years ago, his prior smoking damaged his lungs and makes recovery more difficult. Please take heed smokers!

ONE YEAR AND COUNTING! – March 23, 2007

Today marks the first birthday of my stem cell transplant. I thought that it would be an appropriate time for a long overdue updating of my blog. For those of you who have been checking, I appreciate your interest, concern and patience.

The past five months have been a series of ups and downs. While trying to get myself in some semblance of shape and resume my “new normal” life, I have encountered a few setbacks. On December 9, I had pain in my lower left back and was experiencing extreme shortness of breath (more than the shortness that I’d had since the transplant). I called my doctor (Mehta) and he instructed me to go immediately to the Northwestern Memorial Hospital Emergency Room. X-rays showed that I had a pulmonary-embolism (PE) (blood clot) in my left lung. I was in the hospital for five days while they treated me and tried to determine where the clot originated (suspected from a PICC line that I had in my arm for four months) and scanned my entire body looking for more developing clots (none were found). The treatment consists of two shots a day in my stomach of Lovenox (anti-clotting blood thinner). Over several months the existing clot should dissolve and future clots should be prevented. This will likely continue for at least six months.  I find it ironic that a year ago (before transplant) I had virtually no platelets (the blood cells that facilitate clotting), now they’re concerned with excessive clotting.

After my pulmonary-embolism I gradually resumed my exercise routine and was getting myself back into the shape I was in before the pulmonary-embolism. In early February my doctor ordered an x-ray to determine if the pulmonary-embolism was shrinking as expected. It was. The x-ray, however, also revealed that a small spot that I had had on my lung for well over a year had increased in size during the past six weeks. A needle-biopsy was ordered for the following week. The good news is that, after several agonizing days of waiting, the results came back a negative — the spot was not cancerous. Unfortunately, the biopsy process caused a nemothorax in my lung. To fix this they inserted a tube in my chest to allow the air pocket to escape and sent me home for a few days. Upon returning, x-rays showed that nothing had changed. They then inserted another tube. When I returned, again x-rays showed no improvement. Finally they decided to check me into the hospital and put me on a ventilator overnight. That did the trick — nemothorax gone! I experienced no pain (only frustration) through this whole ordeal. Thankfully, I didn’t realize that it could have been fatal until I researched for this blog — ignorance is bliss.

On March 3, Cookie and I visited our daughter Mary in San Diego for the weekend, met her 5^th grade students and saw her new apartment. We had a wonderful time but I found myself easily becoming short of breath and requiring frequent rests. I had a standard appointment with Dr. Mehta on Tuesday, March 6 and reported my symptoms to him. Since Cookie had recently had the flu, he though I might have caught it. He tweaked my meds and told me to keep him informed over the next several days. My condition had only gotten worse and he had me check into NMH on Monday, March 12, for extensive testing. I was prodded, poked, stuck, x-rayed, CT-scanned, biopsied, swabbed, etc. by virtually every department in the hospital including the transplant team, oncology, pulmonary, cardio, infectious diseases, ophthalmology, dermatology and radiology. As one nurse put it, “I think that you’ve been checked out by every department except OB/GYN.” After five days it was concluded that I have a lung condition know as Bronchiolitis Obliterans (BO). This means that some delicate fibrous tissues in my lungs have been damaged, hardened and no longer function in the oxygen/CO2 exchange process. Tests show that I am taking in enough oxygen but I am not able to expel all of the CO2 that I should. The doctors suspect that the cause of the BO is graft-versus-host-disease (GVHD) resulting from my stem cell transplant. Previously I had only experienced GVHD of the gut (diarrhea). Now I have it in the form of dry, flakey skin, dry mouth, dry and irritated eyes and apparently I have GVHD in my lungs. The doctors kicked up some of my meds and added some new ones. (I think that I’m now taking over 35 pills per day. Thank God for Cookie who, among so many other things, keeps track of all of pills and shots.) They discharged me last Friday with a few tanks of oxygen to take home in case I needed it — I haven’t. Bottom line, this thing has to run its course and hopefully the drugs will prevent any further damage. This is merely another little challenge in a wonderful life and I’m very confident that I have a long and fruitful life still ahead of me.

On the occasion of my 1^st re-birthday I’d like to thank all of my family, friends, caregivers, employees and aquantiances who have provide so much in the form of prayers, support, encouragement, care, friendship and laughs.

With love & gratitude – George ☺

I’m alive and well, thank you

Well, it’s been four months since I’ve made a blog entry and for that I sincerely apologize. I’ll try to bring you up to speed as succinctly and accurately as possible. From a clinical, medical, by-the-numbers point of view I’M DOING GREAT! All indications are that the transplant is effectively wiping out my Leukemia. We will have a better handle on this in another 4-5 months but I am extremely confident in a 100% cure (a “miracle” 3 years ago!). I go to the NMH clinic every week or two for continual tests and consultation. With all of the meds that I’m on (40-50 pills a day) they must constantly monitor me and make adjustments. “Cut down this, step up that, let’s try an IV of XYZ…” Stem cell transplants are still relatively new procedures and each patient reacts uniquely. When potential problems are diagnosed I have been immediately referred to specialists in various fields and the issues are addressed. What I hear from the doctors most often is something like: “Yes, your thingamabob is a little abnormal but considering what your body has been through, we’re not surprised. We’ll watch it closely.” All these meds and treatments do have some unpleasant and frustrating side effects (dry mouth, chronic bitter taste, loss of appetite, shakes, diarrhea, fatigue…).  Thankfully, none are painful and certainly well worth the ultimate cure. Medically I’d sum up my progress as: so far, so good. For that I am extremely grateful.

In addition to the medical aspects above, however, there are also physiological and psychological issues that have had a major effect on my well-being. Back in August I was becoming frustrated at my chronic fatigue and weakness. It dawned on me that perhaps I had taken the doctors too literally when they repeatedly told me: “Be patient. Everything is going well. Your strength will come back.” Thinking that I was following doctors’ orders, I had virtually become a couch potato for four months. I spent most of my time at home working on my computer for a few hours a day and then move my La-Z-Boy to watch some TV and usually doze off. I was doing absolutely nothing to get myself back in shape. I had let my body atrophy since my March transplant! It dawned on me that my recovery was in my hands. I had to be proactive in order to get myself back in shape. It was not going to happen with the mere passage of time. With my doctors blessing, I sought out a physical therapist. I am now getting an hour of therapy two days a week and working out at home for about 45 minutes the other five days. I’m not walking nearly as much as I should be but that’s going to change soon. While my energy level is still very low and I remain embarrassingly weak, my condition is improving very slowly. I’m a long way from being back to “normal” but things are going in the right direction. I’m being patient and not setting my goals too high. My next milestone will be able to beat Cookie at arm wrestling.  Ultimately I’m planning on resuming my old routine of swimming three miles a week but that’s a long way from where I am now. As far as my mental attitude, like many others, I let certain things that are beyond my control effect my mood — it happens. The merciful conclusion of the Cubs’ season was a big boost to my disposition. The Bears, Notre Dame and the Bulls have been a blessing!

While I have been doing work at home, I haven’t been going into “the store” (Schaefer’s) on a regular basis. Beginning immediately, I will be going in for a few hours at a time, a few days a week. My days of working 60-70 hours a week are a thing of the past, however, I still plan on being closely involved. My sister, Gene, my daughter, Anje, and our wonderful Schaefer’s team have been doing a fantastic job picking up the slack in my absence. My biggest challenge will be to be a contributing member of the team without stepping on any toes. Wish me luck.

 

I want to THANK all of those who have been so wonderful in supporting both Cookie and me through this trying of time. We are so blessed to have such caring and thoughtful family, doctors, nurses, friends, neighbors, business associates, acquaintances and even strangers. Finally, what would I do without Cookie? My trophy wife just turned sixty last week. To quote from my toast at our celebration dinner: “I could not have gotten through this year without your love, compassion, support, patience, intelligence, fortitude, hard work and your wonderful positive attitude. I can think of no other woman who could have done what you have and at the same time keep a smile on your face virtually 24/7. I love you.”

With Love & Gratitude – George

P.S. — In answer to many inquiries, most wine still tastes poor (bitter) to my palate but a Dewar’s and water hits the spot occasionally. Yes, I am allowed to drink in moderation.

IT’S ABOUT MORE THAN CATCHING FISH

   

0ur fishing trip to the boundary waters of Rainy Lake Minnesota/Canada was great! I’ve made this trip every year since 1990 — sometimes with “old” fishing buddies and sometimes as father/son trips. This year’s trip was very special. I was with long-time friends, Carl Gebuhr and Charlie Chapple, and seven of our sons (George III, Bobby and son-in-law Nathan Cluxton were with me).

We were living on a very comfortable houseboat in God’s country with the eagles, beavers, moose, otters, minks and even a few fish. It only seemed to rain at night or when we were back on the houseboat having our freshly caught walleye for lunch. We had great food and great fishing (for most). For the hearty young men there were heated games of poker and Euchre into the wee hours (but the guys were ready to fish every morning). We had plenty of time for bonding and plenty of time for being by ourselves.

As I promised (and my body dictated) I worked in plenty of “rest time.” I couldn’t stand and cast for more than 10 minutes at a time but I actually found that my poor fly-casting improved when I was sitting down. I avoided those card games and was in bed by 9:30 every night. I actually put on two pounds that I can definitely use right now.

On the final afternoon of fishing I was with Charlie who loves “oldies” music so I had my iPod and speakers playing all afternoon. We didn’t catch a lot of fish but both enjoyed just being alive in this wonderful setting (Charlie had some serious lung surgery a couple of years ago). The afternoon was generally cloudy but shortly before we had to call it quits the sun came out. It seemed that at that very moment John Denver began singing “Sunshine On My Shoulders.” In spite of the fish not cooperating, I had the biggest grin on my face and tears of joy in my eyes. I AM SO BLESSED.

Carpe diem — George

P.S. — I booked the trip for next June.

P.P.S. — The final picture above are the Schaefer members of the Evanston Marching Kazoo Band prior to July 4th Evanston parade. Silly hats are required. I had to take a pass this year but I’ll be back!

Steady Progress — June 18, 2006

Well, it’s been three months since my stem cell transplant and I’m making progress — very slowly, but in the right direction. My basic blood counts (red cells, white cells and platelets) that are checked weekly are more or less in the normal range. That would indicate that the transplant has produced healthy bone marrow that is producing those blood cells. It remains to be seen whether the cancer that caused the initial marrow problem has been eradicated. We may not know for another 6-9 months but the indications look good.

I remain quite weak, have a very low energy level, and have little concentration or patience. I have lost about 40 pounds of which I’d like to put on about 15. Thus far I’ve had no success due to lack of appetite (dry mouth and weird tastes) and continuing digestive problems, which is one of the typical Graft-vs.-Host-Disease  associated with such transplants. I am working out at home using a stationary bicycle, dumbbells and walks around the neighborhood. I’m trying to strike the correct balance between building myself back up and not depleting my already low energy/strength levels. It’s a slow process.

While I’ve made a few visits to the store to say hello to staff and eyeball the premises, I have not done much work there. I have my computer at home and am able to do 3-4 hours a day of my work at the kitchen table. This seems to be working well as I can take rest, eating and bathroom breaks as needed. Thank God for technology. I am still uncertain as to when I will be returning to my office on a more-or-less regular basis. As usual, I’m playing things by ear. Our team at Schaefer’s has been fantastic at picking up the ball for me and, while I’m sure they miss my presence , they understand the circumstances.

At the encouragement of my doctors, family, friends and coworkers, I am going to be leaving on Friday, June 23, on a five-day father/son fishing trip to Rainy Lake, Minnesota. There are ten of us (three families) and we had booked this trip last fall before I had any indication of my medical future. While I feel bad about going fishing before returning to work fulltime, I’m getting over the guilt and am going to make the most of the quality, family-bonding opportunity — carpe diem! As has become my custom these days, I’m going to have to pace myself and get plenty of rest. I’ll have to let the boys catch the big fish.

All in all, I am very grateful for my current condition and the forecasted outcome. I greatly appreciate all of the wonderful support and encouragement that I have received family, friends, neighbors, coworkers, business associates, customers, medical team and total strangers. I can’t think of going through this experience without you. Finally, Cookie, you’ve defined the meaning of “care-giver.” You’ve been fantastic and have put up with an awful lot from me. Thank you and I love you more than ever.

Thank you for your continued concern and support — George

A surprise from Charlie Weis

 

Imagine my surprise last week when I received a large envelope in the mail containing the attached letter and autographed photograph. I am sharing this with you for two reasons. First, to reaffirm what a classy and caring gentleman Charlie Weis is (in addition to being an outstanding coach and role model). My second reason is to THANK whoever is responsible for requesting this of Charlie (who doesn’t know me from…). Anyway, thanks for asking Charlie to write. It was very kind and appreciated. (NO, don’t all of you now take the credit. I won’t believe any of you now.) 

To my fellow classmates of 1966, have a great reunion this weekend! I had intended to be there but won’t be able to this year. I look forward to seeing you at our 50th in 2016. 

Go Irish! — George (Cuno)

WONDERFUL GRADUATIONS ON MAY 14

Sunday, May 14, was a terrific day in many respects for the Schaefer family. We began with a Mother’s Day brunch for Cookie at Bistro 110 and all kids were in attendance. From there we went to the Aire Crown Theatre at McCormick Place to witness George III graduate from Northwestern University Law School (“with honors,” I might add)! What a proud moment for all of us as evident in the photo.

I would have never thought back on May 1 that I’d ever be able to participate in Sunday’s festivities. With the blessing and encouragement of my doctor, however, we did it! Other than twice-weekly visits to the NMH clinic, this was my first venture into the public—my “graduation” of sorts. It was great! While I’ve accepted the fact that my recovery is not going to be as swift as I would like, this was a major milestone. I’m still quite weak and fatigued both physically and mentally but each day gets better. I’ve lost 20+ pounds and nap quite a bit. I’m just now beginning to do some of my “office work” at home after doing nothing for eight weeks! I can’t begin to express my gratitude to Gene, Anje and the entire crew at Schaefer’s for picking up the ball for me – you’re the best!

My other bit of great news is that my doctor said that there is no reason that I cannot go on our 10-person father-son fishing trip on June 23. This had been planned long before I even knew what “stem cell transplant” meant and I have really been looking forward to it. Look out fish, here come the Schaefer men!

Thank you again for your interest and wonderful support.

George & family

CONTINUED IMPROVEMENT AS OF MAY 1

 

Wow, where has the time gone? It’s been 38 days since my transplant and more than three weeks since my last blog posting on April 7 (below). In general things have been going well.

I should have been knocking on wood as I was previously gloating about my speedy recovery and release from the hospital. Shortly thereafter I was put back in the hospital for another week. I was experiencing one of various forms of Graft Versus Host Disease (GVHD) that are not at all unexpected and, in moderation, are a positive sign that the transplant will be effective. In my case the GVHD has been mainly digestive and bowel related (don’t worry, no more details will follow). I’ve been visiting the hospital once or twice a week as an out-patient as the docs run various tests, monitor my condition and tweak the 15+ medications that I’ve been taking. They are very happy with my progress and I’m learning (slowly) that I just have to be a more patient patient. I’m learning that I can’t control everything and that I have to put myself in the care, love and trust of others. I’m in absolutely no pain but am very weak and fatigued. I have to say that this challenge is a very positive learning experience for me. Bottom line, things are going in the right direction with only occasional bumps in the road.

My pre-transplant plan (NOT the doctors) was for me to be back to work and semi-functional by today, May 1. Boy, was I ever wrong there! I’m no longer setting deadlines on myself or my recovery. I remain, however, 100% confident that my recovery will eventually be complete. The doctors do support this opinion of mine although they will never use the term “100%.”

Without getting too sentimental or emotional, as I have been inclined to do lately, suffice it to say that I am more gratefully than ever for the wonderful support that I have received from family, friends, co-workers, medical professionals and, of course, our Creator. THANK YOU ALL.

Love – George

P.S. — I wish to apologize for this impersonal form of communication but it’s the best that I can do for now — see, I am learning my limits. I’m sorry that I am unable to respond to your many kind notes, cards, blog comments, emails, phone calls and well-wishes. Thank you for your understanding.

Home Sweet Home!

I’m delighted to be writing this blog posting from the comforts of HOME. That’s right! I was released from Northwestern Memorial Hospital yesterday, April 6 — exactly two weeks after my stem cell transplant. When I was told to expect a 3-4 week hospital stay after the transplant, I thought that I could do better than that. I have to admit, however, that even I was delightfully surprised to be "sprung" so early. The doctors feel that my blood counts and other keys tests indicated that my recovery could continue safely in the friendly confines and comforts of home. Although it means more work for my home "caregiver," Cookie is delighted not to be making those daily treks to the hospital followed by hours upon boring hours sitting by my bedside, while I slept most of the time.

Generally, I am feeling pretty good and am in no pain. However, I have virtually no physical or mental energy (or hair). I have had absolutely no appetite but have somehow managed to put on weight! Considering all that my body has been put through and the remarkable rebuilding of my entire blood system with the stem cells of my donor, I’m feeling much better than I would expect. There is still a lot of repairing and healing that must take place over the next several months. As a matter of fact, I really won’t be considered completely cured until a year from now. I am a strong believer in the old adage: A job well begun is half done. 

I’d like to take this opportunity to thank Dr. Jayesh Mehta, Dr. Kamran Rashid and the entire transplant team at NWH. And then there are the nurses on 15-East — Wow! What a remarkably talented and companionate team. They provided much invaluable TLC to get me through some challenging times. I cannot thank you enough, ladies. All of the above, of course, are under the direction of my fine and trusted friend Dr. Steve Rosen, Director of the Lurie Comprehensive Cancer Center at NMH. Steve’s outstanding leadership, management and compassion are evident throughout the entire Lurie Center. 

I doubt that if thirty-three years ago when she said "I do." to the innocuous question: "Do you take … in good times and in bad … in sickness and in health … ," that Cookie had any idea of what she was getting herself into the past seven years. Nevertheless she has addressed the challenges with her usual love, compassion, tenacity and dedication. Never flinching at any task or allowing herself to wallow in self-pity, she has provided me with every bit of love and support that I could ever hope for. I love you, Cookie. The love, support and strength that our kids, Anje (and Nathan), George (and Molly), Mary Eileen and Bobby, have demonstrated has been incredible. I am so grateful for you all "being there" and so proud to call you mine. 

THANK YOU for your continuing thoughts, prayers and wonderful support. I can’t imagine going through this without you behind me. Please keep it up. One request please, NO GIFTS, food, publications, videos, etc. We are more blessed than we can cope with. Within the next couple of weeks I'll let you know something that you can do if you are so moved. 

With Love & Gratitude — George

Transplant Completed

Hi all – Sorry for the delay in updating the blog–George has been pretty tired since the pre-transplant chemo he had last week.  We're filling in for him to update the blog. 

His transplant was completed successfully one week ago and everything's proceeding as planned.  His doctors say that now we'll just wait to see how well the new cells are accepted into his system.  It's somewhat of a waiting game at this point. 

His nurses recommend that he walks 1 mile a day to help the recovery.  Cookie reports that, despite his exhaustion, he races through this exercise and is determined to speed up his recovery. 

His room is set up for a king.  What else would you expect from the guy who once lived in a place he called Camelot?  He's got two computers, wireless internet access and his iPod is hooked up to a stereo.  (I'm sure it was playing Jimmy Buffett today because of the nice weather.)  He's also got Cookie there with him everyday to keep him company. 

Though he's enjoying cards and messages on the blog, he's not up for calls or visitors quite yet.  His top priority is still to rest and concentrate on recovery.  We'll let you know when this changes. Thank you again for your continued support!  Your prayers have been working.   

With Love,

The Schaefer Family