The First Three Month Mark

THE THREE MONTH MARK Well as you know the decision I arrived at is to follow Dr. Pollock’s advice to just watch and wait. Last week marked the three month mark since my surgery so I went for a CT scan of my abdomen, pelvis and chest, with iv contrast and oral barium (Berry this time, Apple next time for those of you that have ever had to drink this stuff!) which I will get every 3 months for the next three years. The good new is, no evidence of re-growth in my abdominal and no signs of Cancer anywhere else! Unfortunatly when it rains, it pours. I’m defiantly being tested. My Dad has suffered a catastrophic stroke with a major bleed to his brain on the Left side. It has taken his ability to walk, speak, communicate or swallow. He is resting comfortably at Spa Creek Rehab in Annapolis, about 1 mile from his home. Only time will tell if he will survive, or regain his ability to speak, walk or eat on his own. He does appear to be stronger this week. For those of you who pray, I could sure use it!

MD Anderson Cancer Center

Second Opinion, Flew to Houston on Continental Airlines on Tuesday evening and checked into the Holiday Inn Express that offered a free shuttle to MD Anderson. Had been told to come out there prepared to stay for 5-10 days. The next morning I took the shuttle to MD Anderson at 6:30am for my 7:30 appointment with Dr. Raphael Pollock, the head of the Department of Surgical Oncology. I don't know if I can find the words to describe how HUGE this facility is. It is a massive city of 30+ high rise buildings, stretching over a couple of blocks connected by sky ways. MD Anderson has a true, Sarcoma Cancer Center and claims to see more Sarcoma Cancer patients in a Month, than all the other facilities in the world see in a year! They also claim to better the national Statistics on Cancer by 5%. There I found myself in the waiting room surrounded by about 10 people diagnosed with Sarcomas. The woman next to me was back for her 3 year check up. She was diagnosed 10 years ago, and had undergone 12 surgeries, 3 Chemo-Therapy regiments, and years of radiation which had caused other types of Cancer and Radiation Burns. But she was, still here 10 years later on her third head of hair that had all came back different colors and textures. My Meeting with Dr. Pollock was short. He had reviewed my surgical reports, X-rays, tissue slides etc. He asked me, what I knew or had been told about my Cancer. I told him that Dr. Ettinger of Johns Hopkins had hit me between the eyes with facts and figures. He had started out with an evaluation from Sloan Kettering using my age, size and type of tumor that plainly stated a 49% survival rate over the next 4 years, then dropped into the 30's. Dr. Ettinger had plainly stated that this cancer would probably kill me, it would more than likely come back as lung cancer and the only small hope was toxic, junk yard dog Chemo Therapy administer in Hospital over the next three months, that only offered a (5%) success rate and killed many, but which he highly recommended and further recommended I start immediately. I was slated to begin it in Early November at Anne Arundel Medical Center under the supervision of Dr. Stan Watkins. Dr. Pollock said he disagreed and couldn't see any reason to administer Chemo Therapy at this point. The Tumor had been surgically removed, leaving nothing for him to measure the results of the Chemo Therapy by. He agrees as to the type of Cancer, the short survival rate and that there are cells left behind from the surgery, but feels there is less than a 20% chance of them growing in another location and further felt there was less than a 20% chance of them growing back at the original site either! He wants to just watch and wait. Followed closely with Cat Scans and Pet Scans every 3 Months. He feels that when and if it comes back, we'll deal with it then with Chemo Therapy, Radiation or Surgery. He further feels we lose nothing by waiting, and gain nothing by jumping into this. He then told me to "GO HOME." He would call me with the opinion of the Conference He presented my case at the Sarcoma Conference on Thursday October 23. He called me on Friday Morning to said that the Broad spectrum of Doctors and Surgeons at the Sarcoma Conference concurred with his assessment and felt Chemo-Therapy was not warranted at this point! Wow, what a difference of opinions. How could there be such a difference. He simply said that Dr. Ettinger is a brilliant, well respected Johns Hopkins Doctor dealing with a rare cancer. He further stated that I had come for a second "Opinion" and that is what I had, but now from the largest Sarcoma Center in the World, given to me by one of the Top Doctors at the Largest Sarcoma Center in the World. The choice of what to do was mine! I've decided Quality vs Quantity. I'll get the monthly scans and check-up and wait to see if it re-appears and will deal with it then, under the care of MD Anderson. Well that's it for now. Will probably be about a month before I post again as that is when my first follow up scan is scheduled! I will anxiously await the results. I'm looking forward to the holidays and time spent with family and friends.

Warrens Battle With Liposarcoma

Is God Knocking? I’ve never know exactly where I stand on Religion there for, I don’t discuss it. When I was young, my mother told me about the Tooth Fairy, The Easter Bunny, Santa Clause and God. As the years wore on, I eventually found out that there wasn’t really a tooth fairy, no Easter Bunny and now that I live in a house with a chimney and have been relatively good the last two years, Santa hasn’t been around, so I’m starting to doubt that one also. There is nothing wrong with living life by the golden rules, so I have chosen to do so. I’m a very logical man, and some things are a little hard to fathom, this place called heaven, Hell, God, Satin……….When things bring me to my knees, I pray. I prayed hard when my mother was dieing, I begged for one more year with her. I pleaded for God to prove he was really there and, Mother got better for one year. We spent a lot of time together, then she was gone. I’d like to see her again in Heaven. Josephine: I boarded the plane on Tuesday October 21 bound for MD Anderson in Houston Texas for a second opinion. I had the window seat, the middle seat was empty and the Isle seat was occupied by a middle aged black woman. She was quiet, well dressed. We didn’t talk. About an hour into the flight, she reached out and gently taped my shoulder. When I looked at her she extended her hand and introduced herself as Josephine. She then apologized and simply said, “I don’t ever do things like this, but something inside of me is compelling me to ask, “Are you going to Heaven?” I replied, I wasn’t sure. We didn’t speak till we were getting off the plane. She lives in Baltimore and was meeting her husband and four children in Houston, on her way for a job Interview. Seconds: I arrived at MD Anderson at 6:30 am for my 7:30 appointment on October 22. I boarded the “B” Elevator as instructed and when I reached for the 9th floor button, there was a card wedged behind the button. It was a two sided business card with a short story Just a Second It ended with, Many assume they will go to haven for one reason or another, but what if their assumption is wrong……Read the bible and learn how you can be sure….. Am I just being emotional, or is God Knocking at my Door????

And so it Begins.

I have been searching for a vehicle to communicate with family, friends and those that have been diagnosed with Liposarcoma. I can only hope that my journey and postings will offer some direction and hope. I don't know where my journey will lead, but it begins now. At this time, it looks like a Blog will allow me to provide you with an Internet site that we can communicate through as I proceed on this journey. This first post will be the longest as I will attempt to bring you up to date from a day early in July through today, October 18, 2008 From then on, they will be much shorter,(I promise) As many of you know, it all started with a slight pain in my right testicle in June 2008. I've always kept up with my doctors on everything from head to toe. By Jan. 15th I have always scheduled my full years dentist appointments, eye exam, physicals, urologist and dermatologist. Since age 47 I get an upper and lower endoscopy every other year. I knew the discomfort in my right testicle wasn't right. The urologist ran the normal tests for testicular and prostate cancer and ruled these out through a digital exam, sonogram and a blood work-up, including a PSA. He then put me on Cipro to rule out any chance of an infection, but nothing worked and the discomfort continued. Then my first break came when a different urologist, Dr. David McDermott (Sharon's friend) examined me. He immediately noticed enlarged blood vessels in my right testicle and ordered a cat scan of my lower right abdomen. There it was, a football size tumor wrapped around my ureter choking of my right kidney. A needle biopsy named it a Liposarcoma of a myxoid type cell. http://sarcomahelp.org/Newsletters/V01N05/Liposarcoma/liposarcoma.htm Unfortunately, one of the rarest of all cancers, (1 in 1,000)with a very low survival rate. My whole world has changed. I couldn't even spell it or pronounce it..( now those of you that know me, know I can't spell anything right anyway). Dr. McDermott so kindly offered to follow this through if I would allow him as he is a urologist and not an oncologist. He found an oncology surgeon that had just transferred to Anne Arundel Medical Center, Dr. Kurtis Campbell from Johns Hopkins with some 26+ year of experience, and 13 years as a surgeon. He is probably in his 40s and at the top of his game. The decision was made to remove the tumor immediately as my kidney was dying and would cause more immediate problems than the cancer itself. Surgery went well on August 26th with two top surgeons, Dr. Kurtis Campbell and Dr. David McDermott. They removed a 19cm tumor, my right kidney, my appendix and a portion of my small and large intestine. When I woke the surgeons were elated as they felt they got it all out in one neat package. Unfortunately, when the pathologist report came back, there wasn't a clean edge along the incision line, meaning cancer cells are left in my body. The tumor was classified as high grade, or 3rd stage cancer. Dr. Campbell suggested I visit Dr. Ettinger at Johns Hopkins as he is a sarcoma expert and well respected in the medical community. I've since spent a lot of time, night and day researching this and asking friends and family to research as well. There are eight facilities in the United States that claim sarcomas to be their specialities. I've decided to visit three to four of them before making a decision on my course of treatment. 1) Johns Hopkins http://www.hopkinskimmelcancercenter.org/ 2) Cancer Treatment Centers of America http://www.cancercenter.com/cancer-hospitals.cfm 3) MD Anderson http://www.mdanderson.org/Care_Centers/Sarcoma/ 4) Seattle Cancer Care Alliance http://www.seattlecca.org/ 1) Johns Hopkins top sarcoma oncologist Dr. David Ettinger ( Top 10 Cancer Doctors) offered little encouragement. He was very direct and showed me the statistics for survival published by Sloan Kettering. Only a 49% survival rate for the first 4 years, then it drops into the 30%. He wants to start chemotherapy immediately, but only offers a deadly cocktail with a 5% effective rate against sarcoma (If you survive the chemo). It is an extremely strong regiment of three chemicals that has to be administered in the hospital for 3 days, 4 intervals, 21days apart. Dr. Watson of Annapolis Oncology works closely with Johns Hopkins and can administer the chemo at Anne Arundel Medical center. This is appealing as it will keep me close to home, friends and my support network. Radiation is apparently not an option at this point. Since the tumor has been removed there is no target for the Radiologist to shoot at. Dr Ettinger is encouraging me to seek additional opinions and has agreed to review them with me to get the best. 2) The Cancer Treatment Centers of America are located in Philadelphia. I am going there the end of October, upon returning from MD Anderson. They even pay for my flight and pick you up at the airport. I like the way they have responded to me. They apparently attack the cancer with chemotherapy but feel they can administer the chemo at a higher concentration by keeping your body, mind and soul healthy with pastoral care, naturopathic medicine and advanced nutrition. They have two gourmet chefs, one is a pastry chef! 3) I've always known that I have a Guardian Angel and I think she just twisted my fate a little. MD Anderson in Texas treats more sarcoma cancer than all the other facilities in the world combined. They claim to better the national survival rate by 5% (I'll take it!) I was trying to get a quick appointment but with little luck. I had called my cardiologist, Kenneth Lee to tell him what was going on and to prepare him for the calls he was about to receive from the oncologist I had already seen, to see if my heart is strong enough. Of course he was shocked. We talked and I told him about my choices for 2nd opinions. Turns out that one of his current heart patients is a doctor from MD Anderson, who has traveled to Washington DC to specifically see Dr. Lee which has resulted in a Wednesday 7am appointment in Houston Texas for me! They want me there for 5-10 days for a full evaluation, and then to present my case at the Sarcoma Conference to come up with the best course! 4) Seattle Cancer Alliance was recommended by a fellow realtor, who took her husband there after he was given months to live (different cancer). He is happy and healthy 10 years later. They are ready to see me and have all my medical records, but I am afraid I am running out of time to start treatment. I'll know more after my next two appointments and will then make an educated decision if I have all the information I need, or want one more opinion I guess that is the end of this Chapter but certainly not the last chapter of the book! You now know what I know, so my next blog will be to bring you up to date as the journey unfolds. Warren