I'm Spence making this post at the request of Louise...not because she is sick but probably because she was mostly sedated when we talked to Dr. Lewkowitz after the endoscopy. Dr. Lewkowitz is our GI doctor who originally did the endoscopy when the esophageal tumor was discovered. He said that the good news was that the large (1 1/2 inch long) tumor he found 4 months ago, is completely gone. He saw no remnants or evidence of that tumor. Isn't that an answer to the many prayers you have all made for Louise?! But the other news is that bottom third of the esophagus had been really ulcerated and scarred by the radiation. That left the opening at the base of the esophagus, as it enters the stomach, to be about the width of a pencil. He showed me a picture of it. The normal size is 2 or 3 times that size. It looked like the walls of the esophagus were just swollen from the heat of the radiation. The doctor could not get the scope through the opening to inspect the stomach. The upper 2/3 of the esophagus were normal and looked healthy.
So this answers the big question of why Louise could not swallow. She can swallow but the solid food hits that pencil-size opening at the end of her esophagus and can go no further. That is why she has been throwing up most of the solid foods she has been eating. I think that she has not had much larger of an opening in her esophagus than she has now since probably back through May or June of this year. We are pretty sure that the tumor was shrunk in size after about 7-10 days into her radiation. That is when she received the complete relief from her year-long chest and back pain. Maybe at that time, before the esophagus became so damaged as it is now, could she eat some solid food.
So where do we go from here? Dr. Lewkowitz didn't feel like the small opening would would get much bigger on its own. He has a dilating procedure that he could do about 6 to 8 times that would open it up somewhat but would take a long time to do. I felt like his first choice as a solution was surgery. He told me right up front that she probably should have surgery to remove the bottom third of the esophagus to remove the area of tissue that had the tumor attached, so as to further insure that the tumor would not return. He then said it would also be a solution to opening up the esophagus since the upper 2/3 was in such good shape and would then give a normal size ending. The procedure would be to cut out the lower third of the esophagus and maybe the upper part of the stomach and then pull up and reattach the stomach to the upper esophagus. He didn't feel any intestine transplant to the esophagus was necessary. Though it would be a difficult surgery, it would not be as radical as originally conceived. Louise has so much courage and she, right off the bat, said she thought that was the best solution. It would prevent any cancer from coming back in that area and would again give her the ability to eat solid foods.
Dr. Lewkowitz did a "dusting" of the area where the tumor had once been which he is sending to the lab. The results of that test will be like a pathology report (he called it cytology) telling if there is cancer still there. He also said we needed to get a pet scan which tells of any cancer remaining in the body. We knew that and it is set to be done in early January. When Dr. Lewkowitz gets the cytology report next Monday he will call Dr. Donovan, the oncologist and discuss the next steps in this journey to good health. We meet with Dr. Donovan next Wednesday, the 8th and that is when we might get more answers.
The one question that still didn't get answered is what kind of shape her stomach is in. We were warned that the upper part of the stomach would receive the effects of the radiation. We feel the radiation and probably the chemo also caused Louise's stomach at week 5 no longer to tolerate much food volume at any point in time. That is why she was put on a pump to dribble in the nutrients only as fast as her stomach could cope. We have moved that pump speed up recently and had no effects. So we are going to continue to increase the volume to see if it has now healed to the point that she could go back to the gravity feed bags or even getting all nutrients from 5 bottles of Ensure per day taken orally. That would improve her quality of life to go from being tethered to a food bag 24 hours a day to drinking her nutrients most of the time.
So that is the long version of the story for now. Louise and I are still absolutely thrilled that this second test (endoscopy) confirmed the CT scan that this big bad ugly tumor is gone and with it hopefully all cancer in her body is gone. What a fantastic gift. We rejoice with you that she has been so blessed by Heavenly Father and by modern medicine! Thanks again for your prayers and positive thoughts. They are all so important and each one cherished.
Love, Spence
Wonderful news! The surgery to open up the esophagus sounds tricky but as you both seem to think, necessary. A liquid diet for the rest of her life would not be fun at all. That is what my mother has had to do for the past 6 months or so. We are offering prayers of thanksgiving and continued prayers for complete health for Louise!
ReplyDeleteLove, Becky
Dear Spence/Louise: All of this sounds--in the grand scheme of things-good...The surgery would take place when? And how will they make sure that she has enough strength to go through that? When would it happen? And did he give you any idea of the recovery time? Let me know everything... maybe I can come help at that time? I would be happy to take care of the house/cook while Louise convalesces..
ReplyDeleteBig hug, Sue
I have been in awe at God's mercy all evening long. What wonderful progress towards full health. We love you and rejoice with you tonight! HUGS!!!
ReplyDeleteyay!
ReplyDeleteLouise is so incredibly positive. How awful to not be able to eat. She is so awesome. I love you all so much. I'm so glad you are getting good news. We are always thinking of you and praying for you.
ReplyDeleteHooray! I'm glad that there is some good news. You guys are amazing.
ReplyDeleteInspiring and wonderful!
ReplyDeletetruly a miracle!
ReplyDeleteExcellent news. We are thrilled for your continued improvement and healing.
ReplyDeleteThanks for the update. I am sure this trial has been harder than anyone can imagine. But through it all you have had such faith and courage. I am so glad to hear that the tumor is fully gone! Continue to "press on" with that "perfect brightness of hope." Certainly better days are ahead!
ReplyDeleteMuch love,
Annie :)
Such wonderful news! You are brave enough for the surgery if that is what you decide to do. I have so admired your courage and your positive outlook. I send my love and prayers your way as always.
ReplyDeleteBlessings on you dear friend!
Thanks so much for the phone call today, Louise. I amso thrilled at the progress you are making and the great news. Thanks so much for the very newsy and thorough update, Spence - a great big thank you to you too. I so admire both of your faith and courage....Love to your whole family, Janet
ReplyDeleteWhat wonderful news! Thank you Spence for writing it. We will continue to remember Louise in our prayers.
ReplyDeleteWhat a wonderful Christmas Present. I am so happy to hear the good news. Heavenly Father certainly is in control. We love you and pray always for both of you.
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