Dear Family,
I have been out of touch right after I told you that this BLOG was operational again. Last Thursday I went to Dr. Fesler and he gave me an incredible two hours of explanation. It ended with the awareness that the pathologist at Mass. Gen. gave a different report than the SLU pathologists. I have decided that I will wait and see and not do anything medical until I get two authorities that agree. Until then I will pray and wait.
It was a wonderful Christmas and great celebrations at church and a winter wonderland all around us. It was so magnificent that it made Currier and Ives look sloppy. However, it was still slick in spots and so one of our most faithful members, Joe Connelly, fell on Christmas morning and broke his hip. I hear that he is doing well, but I have not been able to go and see him.
On my hospital scene, something surprising happened. I was walking down the hall at SLU on one of my initial visits, and a smiling nurse waltzed by me and greeted me, "Good morning, Father Kleba." I was flattered to be recognized, but I was equally startled that someone knew me on my first visit there. At a quick glance I saw that her name was Theresa. I rifled through my memory bank and realized that she could be the Theresa that was Dr. Baggstrom's nurse at Siteman. I waited for her to come out of the room and confronted her in the hall. "Are you Dr. Baggstrom's Theresa" She was and said that she had left Siteman seven months ago about the very time that I called Dr. Baggstrom's office to say that I didn't have cancer and was doing better without that killer chemo. I reiterated my story to Theresa and once more she was happy to hear about my situation. She was very professional and didn't say anything bad about Siteman or Baggstrom, but it was interesting that she left at the time that she did. Maybe she had been reprimanded about her happiness and celebrating my life when the rest of the Siteman attitude was anything but positive and excited.
Last year at this time I was trying to get an airline ticket to go to NY for my Jan. 4th appointment with the Mem. Sloan-Kettering MD's. Imagine if I were trying to get a ticket to NY today. NO WAY, JOSE!
I did laundry today and carried three baskets up and down the 30 steps to the machines in the basement. I didn't think I would ever be able to do that. God is good and I am blessed to have machines and clothes to wash and fold. Now I better go to bed, because tomorrow is the Tuesday Ecumenical Lectionary day.
Love and Peace,
Gerry
Merry Christmas and Happy Holidays,
I think I need to learn how to post another picture of myself on these blogs. If you met me on the street, you wouldn't know me.
It's is snowing in St. Louis, but not too much and not icy, so I think that everyone who makes the effort will be able to get to church. I have more health news than I can digest, but I will begin by saying that my SLU doctor, Mark Fesler, spent two hours with Mary Margaret and me saying what he could about my lymphoma. In brief, they sent the material from my tongue biopsy to the best doctor in the world who happens to be at Mass. General Hospital. She saw things differently from the SLU pathology dept. If I go with her report, but we are waiting for the SLU dept. to take another look; there is good news and bad news. The good news is that the type of lymphoma Mass. Gen. reported is treatable without using the high powered chemos that cause nerve and heart damage. The bad news is that it is incurable, but the hope is that it can be stabilized and kept in remission. Some people don't treat this type at all and it just goes away like it came. Fesler said, "The people he knows who skip treatment don't have it in the mouth and on their tongue, but rather in less strategic places, like under their arm.
I guess all these people are like me and want to breath and swallow so the tongue growth is a problem.
Right now I am in the wait and see camp and trying to mull over all the written material Fesler gave us. Since he spent this amazing amount of time with us, I wish that I could have recorded this to listen again. I'm sure the same ty pe of phone that would help me get a new picture on this blog could have recorded the conversation also. I don't have that type of phone, because I don't like to have an object in my pocket that is smarter than me. I have another appointment with Fesler on Jan. 4, the Feast of St. Elizabeth Ann Seton. Last year on her feast I was in NY. awaiting an appointment with Dr. Rusch, my lung surgeon.
Yesterday was Mary Margaret's birthday and the family and some friends were going to take her out to dinner. Barbara Parker, a dear friend since my Visitation days in the 70's, was coming along. When she was walking down the steps to get in the car, she fell and broke her leg. The dinner was off as we spent the night at the emergency room at Barnes Hosp. During those many hours I wondered how many of the folks there were without insurance and getting their primary medical care in the most expensive and least productive setting, the ER. All of the people with insurance and who donate to the hospital foundation pay the bill for their care. I do hope that the new health care plan gets us on the road to fix that and get everyone in our country gets the great health care that I have through the diocesan priest program in St. Louis. We left the hospital at 1 AM with Barbara in her room and Mary Margaret and me having spent more time in a hospital yesterday than the average MD. Barbara had surgery to fix her leg this morning and fortunately the MD on call was the same person who gave her a knee replacement two years ago. He is pleased with how things went today.
But now it's Christmas and it's still snowing and I wish all of you the best. May these holidays that many describe as hectic become HOLY for all of us.
Love and Peace,
Gerry
The meaning of Christmas is that Jesus became Fully Human-Not Mechanical, but Mysterious and Mystical while still down to earth.
Today was a good day with my Ecumenical Lectionary Group Christmas Custom. We have been gathering for 25 years to study the Sunday scripture and plan our preaching. Before Christmas we each take a book or two off our shelves and bring it to offer to someone in the group and listen as another participant describes his/her book and then an interested party claims it for their literary enrichment. Today was the first day in all these years when no one forgot a book and several people brought and extra prepared to fill the anticipated void. Nobody offered a Kindle or an I-Pad. All of us religious people are so traditional.
After a wonderful scripture discussion I went swimming at the Y and later visited with my secretary once again before she left for her end of the year vacation. She always saves time to have these last days of the year off. Delores continues to be a great blessing and supports me through all the health hassles that I have faced in these last years. I left her and went to get a massage which has turned out to be a weekly blessing in my life. Cori Rose is such a fine therapist and is already promising to do all that she can for me as the new chemo treatments begin. When my internist, Heidi Miller, MD. prescribed that I should have a massage once a week, it was the best prescription that I have ever gotten from a doctor.
I spent 1 hr. and a 1/2 playing piano and trying to become proficient with the jazzy Christmas music out of a Charlie Brown Christmas. The show was written 50 years ago and takes on all the current problems of materialism, depression and people with a me first attitude. They are always the contemporary issues. Finally, tonight before writing this I wrote my Christmas letter. I haven't done one in two years, because two years ago today I had my first chemo for the FAKE LUNG CANCER and then last year at this time I was trying to get to Mem. Sloan-Kettering in N.Y. to get treated for non-smoker's lung cancer. So I was too busy and sick to write a letter. I will try to see how I might transfer this letter to this BLOG.
I'm enjoying listening to Christmas music as I write this. It is a wonderful season for us to live in hope and celebrate the coming of the light on this shortest day of the year. About ten years ago I was in Ireland with Rich Creason and Don Schramm and we went to the 5,000 yr. old tomb at Newgrange and got into the dark inner most chamber where only today (winter solstace) the sun shines directly down the shaft into the inner sanctum. It is awesome and errie to think of the intelligence and engineering and astrology of these ancient people who concieved and built this place. CELTIC WISDOM AND INGENUITY! Later on (3,500 yr.) in that same country St. Cronan was the abbot at a monastery that was known for its hospitality. When visitors came in droves and he was unable to care for them all, he turned water into beer to answer their needs. That was the miracle that led to his canonization. Another marvelous feat.
Longing for the Light this Advent and for a smart doctor to make me well,
Gerry
I didn't have any plans to resurrect this blog once I was over my fake cancer, but now it seems that I have another battle and I know how interested you all are. So today I paid another $20. to renew this for a third year and when I spend $20. you know that I'm going to use it. During August I began to realize that I had an obstruction in my throat. I jokingly referred to it as a furball, but I have never had a cat so I don't really know anything about those critters. However, I put off doing anything about this because I was tired of doctors, and I subscribed to my mother's theory, "It came by itself, it will go away by itself." When it didn't go away I called my friend, Jack Eisenbeis, MD, at SLU care and went to see him. I had known Jack since he did a service project for me at Visitation Parish in the 1980's when he was a student at DeSmet H. S. Then he went to U.ND. while I was teaching there and I was at his graduation. So Jack is another of my sons. He and his family prayed for me to get over the cancer that I never had.
Jack put a camera down my throat and discovered a large growth on the back of my tongue and wondered how it was that I was able to swallow. On the Mon. before Thanksgiving he removed a large chunk of it, big as half a Twinkie, aren't you impressed with the medical terminology, and sent some of it away to other hospitals for study. As you might expect, I now demand more than one opinion. SLU care (I don't go to Barnes-Jewish-Siteman) studied this and determined that I had lymphoma of the tongue which is thought to be easily treatable and cured. However, the chemo of choice has the side effect of causing nerve damage to hands and feet. The oncologist, Mark Fesler, MD., is aware that I have suffered from my share of that and continue to be afflicted so he has ruled that out.
The second chemo is not as well known, because few people use it since few people have any nerves that have be
I go back to Dr. Fessler on Thurs. to hear him tell me whether he has gotten a second opinion from any of the other hospitals that verify the SLU analysis. If so, he will tell me when I will go to get a port installed in my chest and when the chemo will begin. As far as I am concerned, it cannot begin quickly enough. If it takes six months, then I will be better by the 4th of July. When I walked out of Siteman 13 months ago I told Dr. Maria Baggstrom, "I'm leaving here and no one is ever going to stick another needle into my chest with a bag of poison of the other end." I guess I should learn to NEVER say NEVER!
It won't make any difference if this chemo gives me a bag taste in my mouth like the previous ones did. Since the biopsy of my tongue I have no taste buds whatsoever and a jar of peppers would taste the same as vanilla ice cream. No taste at all. When I mentioned to Jack, the surgeon, that he must have held out my tongue with a vice grips during the procedure, he said, "You don't want to know what I used, but a vice grip would be too delicate."
Love and Peace to all as Advent winds down,
Gerry
It's been six weeks since I wrote anything here, and I'm still alive and getting a bit stronger each day. I went to the Sacred Heart Retreat House outside of Castle Rock, CO for nine days in the beginning of May. It was a wonderful retreat on the theme "Abiding in Restful Peace" "as the Father has loved me, so I have loved you, remain in my love." My retreat director was a long time friend, Fr. Vince Hovley,SJ. After that was over I visited with some friends and I came home for a family (the Griamud Family which includes me) wedding.
I thought that I might go away for the rest of the month after that, but instead I decided to stay home and begin writing my book. It is a memoir entitled, INCURABLE HOPE, since Maria always said that I was INCURABLE and I always HOPED and told her that when I got better, she would never be able to tell others that they were incurable. So far I have written 14,000 words since Friday and it rolls out like musical notes rolled of the pen of Mozart at age 13. By the time that Mozart was my age, he was dead for 35 years.
I did get some good R and R, but I think that more of it is in order. Right now, however, the most demanding thing in my life is to prepare for and be here when Archbishop Carlson comes to celebrate Mass on June 12th at 5 PM and then we will have a BarB Q and Pot luck. The parish provides the meat and the drinks. If you would like to join us, please bring your favorite dish, your dancing shoes too and come on down. It will be a wonderful evening. We were going to have Bob Carlson come on Sunday morning, but there is a bike race around our neighborhood on Sun. and the main streets will be closed and there won't be any access to St. Cronan's. So we are only having one Mass that weekend and trust that it will be quite the celebration.
In my effort to get stronger, I have gotten a personal trainer at the Y. He has told me to ride the exercise bicycle and start with five minutes and add a minute a day. I'm up to ten. I won't be doing the tour de France until next year, so Lance can have a breather.
Please pray for my secretary, Delores, who has been diagnosed with Crone's Disease. She has no appetite and has lost considerable weight. Pray that the MD gets her on a diet that works soon. She was always a person who enjoyed eating in the past, so this is a mystery and is dreadful. Pray for the MD also. My experience has given me a bit of healthy skepticism about the health care field. But I know that we certainly can't do without them.
This may be my last BLOG as I devote myself to writing the book.
Love and Peace,
Gerry
Just when you thought that I ran out of balarney, here I go again. When I last wrote I had just received the pathology report from Memorial Sloan-Kettering. After that I went to work to arrange for the removal of my chest port (the place where the chemo needle was inserted) by the people at the Siteman Cancer Center. It took me several phone calls and a twelve day wait, but that was finally accomplished last Thursday (10 days ago). Now one would think that I would be jumping for joy, doing handstands and cartwheels; but such in not the case.
After I had my port removed I went to visit the secretary at the chemo clinic at Siteman, because she was from a church that prayed for me and her husband had lung cancer. I often prayed with her, so I thought that I would go and check in. She was happy to see me and shocked to hear the news of NO CANCER and wished that her husband would hear the same, but she had called 911 for him that very morning. She called the head nurse over for me to tell her the story and she too was dazed and dumbfounded. Then she said to me, "YOU have to ring the bell." I didn't know what she was referring to, but she led me to a large brass bell hanging on the wall by the waiting area coffee maching. Under it was a plague indicating that the bell was rung when someone successfully completed their treatment at Siteman. I gave it five loud clangs and bad Siteman farewell. I had never heard it rung in the year that I had been there for treatment.
It seems that when all this was finished, I fully realized that I didn't have cancer; and I figuratively collapsed. I fell into a funk, a black hole, ran out of gas, ran on fumes, was bone weary, dog tired, limp as a dish rag, useless as a bucket of spit and any other cliche you can think of to describe fatigue and exhaustion. I would sleep ten hours and get up tired as hound dog after a chase. That's why I didn't write. I didn't do anything but recline in my lazy boy, because I was too tired to walk all the steps to bed.
So today I got the physcial activity award, because I crossed the street twice to go to the Vincent de Paul breakfast after each Mass and then I sat in the sun for half an hour to soak up some Vitamin D. and then I went for a half hour walk in Tower Grove Park and watched ten adult co-ed kick ball games. They have assigned fields and paid umpires and this is Big Time. Since March Madness is over and the Masters, I think that CBS TV should have been there. So additionally I thought that I should really stretch myself today and type this Blog for anyone who might still check.
Healthwise, I have suffered from a runny nose and coughing and think that the allegy season may have caught up with me as it plagues so many in this part of the country. It's usually not a bother, but health experts say it is worse this year. Than my doctor wants me to go and see a lymphoproliferative disorder specialist since that is what my white blood cell problem gets called. I would like to just ignore it, but since I am still alive and the chemo didn't kill me, it is probably something that I will do.
Thank you for your prayers and continued interest in me. I hope to get away during May for a retreat and some real R and R.
Love Always,
Gerry
Well the pathology report from Memorial Sloan-Kettering in NY arrived yesterday. It's twelve pages long and signed off by thirteen doctors. It says that they found absolutely no Cancer in any of the biopsy material from the Barnes Siteman Cancer Center. Hence I never had any lung cancer and I was misdiagnosed from the very beginning in Nov. 2008. It's been a long road and it is good to know the truth of NO CANCER and it is bad to think of all the agony and expense (over a 1/3 of a million dollars) for Medicare, my secondary and myself personally. I'm not sure where to go from here, but the next step is to get my chest port removed tomorrow. That is the place where they stuck in the needles for the chemo. After that is over I hope to leave the hospital and go to visit at Chaumette Winery in Ste. Genevieve and return to St. Louis on Sat. for a family wedding.
I join with all of the Butler Bulldog fans who saw their team come within inches of beating mighty Duke. We can say it with the Cub's fans, "There's always next year."
Keep Easter Joy Alive,
Gerry
This may be she shortest blog of all, but it is certainly another shocker. For the past ten days I have had abdominal pains and pains in my right side. I have been to the ER twice and today I went to the urologist. They all agreed that I have kidney stones and so I have had sleepless nights and no appetite. I am back at Mary Margaret's house and hopeing to make it to St. Cronans for the Triuum. At least it's not lung cancer! That's what my doctor (urologist) said who had surgery for kidney cancer which he self-diagnosed in the year and a half since I last saw him.
Someone once said, "Life is Hard" and I say, in comparison to what?
Thanks for the prayers,
Gerry
As I ponder with disbelief and gratitude the most recent events of my life, I am daffled and baffled and angry and hopeful and dizzified all at the same time. Then there are twenty more emotions besides. I am delighted to share the news and I am worn out repeating the story. Really, I am exhausted and even bored with its retelling.
The goal that I accomplished for today was that I got to talk to Theresa, the nurse at Dr. Maria Baggstrom's office. While I had left two messages there saying that I didn't have lung cancer, I never got a response and feared that the RISK MANAGEMENT FOLKS AT WASHINGTON U. AND THE SITEMAN CANCER CENTER had forbidden any conversation with me. While this angered me even more, it also made it impossible to accomplish the task I had set for today which was to arrange to have my chest port removed - the place where they inserted the needles for the chemo treatments. With this roadblock I thought that I would have go to the Imigration Dept. and get DEPORTED. However, today I called and Theresa answered the phone, was delighted to hear my news and arranged that I could have the surgery done on the day after Easter. One task accomplished.
My task for tomorrow is to call a retreat house and make arrangements for a retreat after Easter so that I can process the last year and a half of my life. I think that God is giving me some direction through the unidentified person who left a book in the vesting area of our church. It is LEFT TO TELL by Immaculee Ilibagiza, one of the seven Tutsis women who hide out for ninty-one days in a bathroom during Rwanda's Hutu genicide. She is the picture of inner peace and forgiveness which is one of the things that I have to contemplate during my retreat.
I did receive some good news yesterday when one of our choir members said that her sister had peripheral nerve damage after she was cured of cancer, but six or eight months after the chemo ended her feeling in her fingers and feet were restored. That is certainly my hope, but the MD's at S-K in NY couldn't make any predictions. In the mean time some are saying that I might be helped with the services of an acupuncturist. I've been looking on the web to locate one and hope they are not sticking me with bad advice.
Now I am patiently awaiting the appearance of the pathology report from S-K. When I receive it I will pass it along to my friend and pathologist, Dr. Gordon Johnson, so that he can explain it to me and inform me about the likelihood that Barnes, Wash. U. should have come up with the right diagnosis. It will be interesting to get his take on this situation.
On a much happier note I was able to join Fr. Rich Creason, classmate and lifelong friend, in his celebrating the recieving of a major award from the Lwanga Renewal Center. It was a great evening. I told Rich that I hoped that he would not sleep at all just being bubbly over the wonderful things that folks said about him. All of it was deserved and some of it was true.
Thank God we did end up with a health care reform bill, but the endless hours of the Congress saying NOTHING NEW made it bearable to watch the NCAA even when Missouri lost. Now I'm rooting for the Butler Bulldogs.
Pray for my feet and hands to make a come back so that I can type this with fewer corrections.
Do any of you remember typing erasers or White Out?
Love,
Gerry
We went to the doctors' building at S-K yesterday to get the approval of the doctors. I had a post-op exam from Valerie Rusch, the lung surgeon, who said that the chest x-ray and the incisions were all wonderful. She came in to the office with a big smile and said, "SO WHAT DO YOU THINK ABOUT THE POWER OF PRAYER"? I told her that if the power of prayer didn't heal of itself, it certainly did get me in contact with Dr. Tanya Trippett who got the wheels in motion at S-K. I don't think that I could have made the big system work there without her opening all the doors. Then Mary Margaret asked her, "How rare is this health situation that Gerald has"? Without missing a beat, she responded, "Rare."
So it is questionable whether Siteman should have been able to detect this initially and saved me from all the hassle of the needless chemo and its ghastly side effects. St. Patrick's Day ended with Tanya taking us out to dinner at the Waldorf-Astoria to celebrate my MIRACLE. I had a 10 oz. Filet Mignon that cost $4.80 an oz. Everything was extraordinary and we had laughs and prayers and celebrated until 11:30 P.
Now it's time to go to the airport. Thanks for all the prayers.
Gerry
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