It is hard to believe that we have only been four weeks since the diagnosis of esophageal cancer. We've sure packed in a lot of ups and downs, learning and changes. This week was the start of treatment. Ed can now be a two-fisted eater. He has a feeding tube into his stomach, bypassing his esophagus. It's a backup in case the radiation treatment causes his throat to be too sore to swallow, or constricts the esophagus. He says he can shove food into his mouth and his stomach at the same time!
We went into Haukelands Hospital on Wednesday morning, strongly requesting a conference with the oncologist and / or surgeon. We had not heard results of the biopsy of the spine, or details of the treatment plan. No contact happened before surgery prep. The surgeon sat down and talked with Ed for about a half-hour when Ed told him that he was very happy to be there, starting the treatment, but that he still didn't know what the treatment plan was. More about that in a minute. The surgery went like clockwork, and Ed came back to tell me that the biopsy had come back negative, hooray. Wednesday night was a happy time. But the doctors all think the tumor on his vertebra is cancer, nonetheless. They are doing a reslicing of the biopsy, and he is getting another biopsy next week. So Thursday morning was back down on the roller coaster.
The surgeon was not happy to hear about the lack of communication. He stepped in and things have started happening. The oncologist came around Thursday, and talked to both of us. He seemed to dread the interview. His handshakes were cold and clammy. But he stood up to our grilling very well, answering all our questions. We've done a lot of homework, and wanted to know the logic tree of treatment decisions as well as the names of the chemotherapy medicines and about the radiation choices. The cancer is most likely inoperable, but we have a slim hope still that the tumor in the spine is benign, and that the coming CT and PET scans of the lungs and liver show that the cancer hasn't metastasized to either of those places. If there is no spread past the esophagus and nearby lymph nodes, they could still beat this disease. Otherwise, no.
Thursday night, after visiting hours, the nurses came around and said it was a pretty slow night. Did anyone want a fried egg on buttered bread? They actually cooked eggs to order for everyone who wanted one. The nursing staff has been wonderful. In spite of that, Ed broke out on Friday. When the doctor came around Friday morning, she said, "I hear you want to go home today." He answered, "No, I want to go home NOW." She said he could go, so he started getting dressed. They stopped him long enough to take out his IV tube and give him a bandage package "to go". That bed is still his, they emphasized. It will be there for him all weekend, in case he needs to come back. Monday morning he has to go back to be discharged. We love how the system works!
Ed doesn't need to deal with pain, only discomfort. He also can still swallow very well. They want him to quit losing weight. I have my 1972 cookbook from when we got married, way before low-fat diets. Yesterday, I fixed fish soup with trout and added creme fraiche (what a difference that makes compared to skim milk!) and a Spanish ham covered with cherry sauce. The cherry sauce used the can of pie filling I smuggled in from my May trip to the US. I thought it was going to be way too much sauce for two of us. But we did a great job of attacking it! I found more cherry pie filling - new import - in the grocery store that has more American food than any others here, so we can do it again. Then after watching a DVD, we topped it off with ice cream. I figure he'll stop losing and I'll start blimping out. But what a way to go!
We went into Haukelands Hospital on Wednesday morning, strongly requesting a conference with the oncologist and / or surgeon. We had not heard results of the biopsy of the spine, or details of the treatment plan. No contact happened before surgery prep. The surgeon sat down and talked with Ed for about a half-hour when Ed told him that he was very happy to be there, starting the treatment, but that he still didn't know what the treatment plan was. More about that in a minute. The surgery went like clockwork, and Ed came back to tell me that the biopsy had come back negative, hooray. Wednesday night was a happy time. But the doctors all think the tumor on his vertebra is cancer, nonetheless. They are doing a reslicing of the biopsy, and he is getting another biopsy next week. So Thursday morning was back down on the roller coaster.
The surgeon was not happy to hear about the lack of communication. He stepped in and things have started happening. The oncologist came around Thursday, and talked to both of us. He seemed to dread the interview. His handshakes were cold and clammy. But he stood up to our grilling very well, answering all our questions. We've done a lot of homework, and wanted to know the logic tree of treatment decisions as well as the names of the chemotherapy medicines and about the radiation choices. The cancer is most likely inoperable, but we have a slim hope still that the tumor in the spine is benign, and that the coming CT and PET scans of the lungs and liver show that the cancer hasn't metastasized to either of those places. If there is no spread past the esophagus and nearby lymph nodes, they could still beat this disease. Otherwise, no.
Thursday night, after visiting hours, the nurses came around and said it was a pretty slow night. Did anyone want a fried egg on buttered bread? They actually cooked eggs to order for everyone who wanted one. The nursing staff has been wonderful. In spite of that, Ed broke out on Friday. When the doctor came around Friday morning, she said, "I hear you want to go home today." He answered, "No, I want to go home NOW." She said he could go, so he started getting dressed. They stopped him long enough to take out his IV tube and give him a bandage package "to go". That bed is still his, they emphasized. It will be there for him all weekend, in case he needs to come back. Monday morning he has to go back to be discharged. We love how the system works!
Ed doesn't need to deal with pain, only discomfort. He also can still swallow very well. They want him to quit losing weight. I have my 1972 cookbook from when we got married, way before low-fat diets. Yesterday, I fixed fish soup with trout and added creme fraiche (what a difference that makes compared to skim milk!) and a Spanish ham covered with cherry sauce. The cherry sauce used the can of pie filling I smuggled in from my May trip to the US. I thought it was going to be way too much sauce for two of us. But we did a great job of attacking it! I found more cherry pie filling - new import - in the grocery store that has more American food than any others here, so we can do it again. Then after watching a DVD, we topped it off with ice cream. I figure he'll stop losing and I'll start blimping out. But what a way to go!
Our friends and families have been wonderful. Being more involved with old (oh, excuse me, long-time) friends' lives is great. Our Japanese friend, who we met while taking German in Vienna a few years back, even sent us kimonos! They comfort her, she says, and they are wonderful. Thank you, Shoko. Skype has been added to the repertoire of a couple of friends, too, so we get to see them. My colleague from the Boeing Leadership Center was just diagnosed with tongue cancer and had surgery last week. Good luck, Jeff and Cheryl! Another colleague from Boeing Employees Coin Club has just died after a brief battle with esophageal cancer. That was a shock. It also emphasizes that we have to be prepared to lose while still being optimistic. Hugs to all of you, and thanks for your good wishes.
Just caught up with you both at an inopportune moment so will be back when having attended to the necessaries and got some much needed rest.
ReplyDeletelove from
DavidX
Hiya it's me back again Pilla,
ReplyDeleteAs sleep, and - very quickly waxing lyrical about the one major hinderance to a good night's rest - any significant bowel movement since my 2nd cycle on Wednesday remain elusive I will take this opportunity to wish Ed all the best outcomes viz-a-viz the various diagnostic permutations, which are so very similar in many ways to my own. I knew relatively soon that they weren't able to chop out 'Goliath' from my Eosophagus (I'm going to start spelling that the American way as I have to stop and think each time I use the word, or replace it with the less attractive 'gullet') and his mets minions (that could be a baseball team could it not?) had gathered as reinforcements in lung, liver, spine, gut and neck so I am banking only on the Real 3 clinical research chemo trial throwing something unexpected into the equation. Or at least, with a great deal of encouragement from me, these toxic ball bearings we keep slinging his way are going to give him and his cronies a hard time before they overpower me.
I am so pleased for his sake, that Ed too, even with surgery, not yet needed on me, has comparatively little pain with which to contend. All my discomforts are readily managed or appear intermittently. So I am enjoying (did I really say that?) being able to continue almost a normal but hastily readjusted life style; gorging on fish chowders full of double cream and and anything else sloppy and fattening in order to bulk up the faltering body weight, and stiil taking plenty of outdoor excercise with my ridgeback dog and friends for company. (Hey though Ed, I have just about got a bit more hair left on my head than you, but in the style of this day and age even when it all goes, sometime soon now, then there are much more important considerations on the horizon).
So lets all pray we can put our fears on the back burner for the time being an place our hopes further down the line in the future: My aim is to join my kid brother, who lives in Johannesburg, South Africa, in New Zealand for the 2011 Rugby World Cup Tournament.
Enough of my aspirations and in signing off I so sincerely wish that things pan out in order for Ed to beat his cancer into submission and for you take the right fork on the road ahead towards your dreams.
Much love to you both and your family
David xxx
Thanks for the encouragement, David. Feel free to use the silly British silent O in spelling Oesophagus. My American readers will be able to figure it out! But keep away from "gullet". Whoever came up with that name, anyway?
ReplyDeleteWe will definitely be rooting for cybershot in the 2011 Rugby World cup! Another thing we have thought of is how many men spend big bucks to wax their chests and backs to get in style. You two won't have to!
Cheers, Pilla xx