I'm once again taking advantage of Virginia Mason's wi-fi to post the latest on John. Today's blood work and X-ray showed all looking great! His white cell count is NORMAL so we can go home. My mom has been incredibly gracious about us taking over her home...And has taken a real "shine" to our cats -- Token in particular. They seem to have mutually developed a game of "Beat the Closet Door." No matter where Token is in the house, the minute he hears her bedroom closet door open he zooms upstairs and tries to get in before she can shut the door. Token is either a big fan of "The Lion, the Witch and the Wardrobe," trying to get to Narnia via the closet or he fancies himself on an exotic safari through the wilds of Mom's clothing. At any rate, I'm sure Mom will be glad to get the pharmacy off of her kitchen counter, the cats out of her closet and dining room cabinets and get some peace, quiet and routine back into her life.
We have an appointment on Thursday with John's oncologist, Dr. Nestor, for a consult on post-surgical chemo. Because some of the lymph nodes removed during surgery showed live cancer cells, we expect Dr. Nestor to recommend some additional treatment. But John's overall attitude, recovery thus far and determination give me confidence that he'll handle this next phase well.
And it's truly, TRULY, with thanks to you all and the incredibly wonderful people who have helped us thus far. I can honestly say that if it were not for John's cancer, we would never have met some of the finest people ever. I include John's surgeon, Dr. Low (what an honorable, knowledgeable, kind gentleman!) the nurses on VM's 16th floor, the IV team at VM, radiologists, even the parking attendants who were so kind to me during my long days at the hospital, other patients and their families...the list is endless. And thank you to you all. Your love, friendship, visits, care and support are so valued. May you know how treasured you are...On to the next step, carrying you all in our hearts...Nancy
Tuesday, May 31, 2011
Friday, May 27, 2011
A Little Bump in the Road
We thought we'd be heading back home tomorrow. But as I write, we are at VM awaiting another follow-up swallow study and CT scan. At this morning's post-surgery appointment, John's blood work showed slightly elevated white cell counts indicating some kind of mild infection. He does not have a fever and the doctors are not overly concerned. His X-ray did show some accumulation of fluid in the chest cavity where his chest tube was removed, but not enough to panic anyone. His body should take care of absorbing or eliminating it.
But as a precaution he'll have these follow-up tests and...lucky Mom...we'll be staying until probably Tuesday. The kitties will be thrilled for some extra "Grandma time" as they are getting a lot of cardio exercise chasing each other up and down stairs.
Keep those good thoughts and prayers coming. Physically John is making good progress. But I think he's a little discouraged, even though his couple of blips have been relatively mild. He has so much support behind him. Thank you AGAIN for your love and friendship... Still walking the path and will keep you apprised...Nancy
But as a precaution he'll have these follow-up tests and...lucky Mom...we'll be staying until probably Tuesday. The kitties will be thrilled for some extra "Grandma time" as they are getting a lot of cardio exercise chasing each other up and down stairs.
Keep those good thoughts and prayers coming. Physically John is making good progress. But I think he's a little discouraged, even though his couple of blips have been relatively mild. He has so much support behind him. Thank you AGAIN for your love and friendship... Still walking the path and will keep you apprised...Nancy
Thursday, May 26, 2011
Delayed Update...Out of Hospital
I'm so sorry to be late in getting info out to everyone! John was discharged from hospital this past Monday, May 23. I haven't had access to wi-fi since. (I did try to "pirate" one of my mother's neighbor's service but, unfortunately, those wily seniors seem to be wise to the idea of password protection!) So we're at a local Starbucks for John's first post-hospital outing and access to the outside world. Here's what's happened since my last posting...
John did have a bit of a relapse with a high temp of 102. The doctors ran all kinds of tests including an EKG. All checked out fine. What they believe happened was that John got off regular schedule with his pain meds resulting in too much discomfort for him to do his breathing exercises. When the last chest tube was removed on Saturday, it left a space. Without John breathing properly, that space collapsed causing his temp to rise and his white cell count to become elevated. Once his pain was back under control, he was able to do his walking, his breathing exercises and his temp went down. So he was discharged on Monday and we've been with my mother ever since.
We've been on an every-three-hour regimen of pain meds, including overnight. It's like having a new-born baby; I feel like I've done everything in that department except push!
Today is John's first day of something resembling food. After only clear fluids for the last 6 days, he can now have "custard-consistency" foods, limited to 1 cup at a time. His first "breakfast" was a parfait of 4 oz. plain Greek-style honey flavored yogurt and 4 oz. of Mott's cinnamon apple sauce. He continues to be reliant on his daily infusion of "Bag-O-Meal" for nutrients which we start around 6 p.m. every night. We initially had set up the infusion at 85 cc's/hour which would allow for about a 12-13 hour feed. But John broke into a heavy sweat and we were advised to cut the rate back. We did so and he was fine. The drawback is that the infusion takes about 16 hours at the slower rate. So we'll gradually increase the rate and see how it goes. The goal over the next few weeks is to increase John's oral intake and decrease the infusion intake.
All in all I am happy to report that he's doing well. I have made appointments with Drs. Taylor (radiologist) and Nestor (oncologist) for next week in Bellingham. I don't think John will need further radiation as pathology showed the tumor was gone, but he will in all likelihood need post-surgical chemo. Dr. Nestor will decide that after consulting with the team at Virginia Mason. Before we leave Seattle we will be seeing Dr. Koehler, a colleague of Dr. Low's, tomorrow for John's first post-op check. If all goes well, we'll be home sometime late Saturday. YIPPEE!!! (My little Jetta's going to be loaded to the gills with cats and their supplies, John and his supplies, me and my liquor...I mean, supplies.)
I figure we're about 3/4 of the way through this gig. I'm praying that any further treatment will get rid of any residual cancer cells once and for all. We could never have come this far without the love and support of you all. For those who could visit, call, pray, send well wishes...you'll never know how much we appreciate and love you. John and I will be working on some jigsaw puzzles and I'll stay in touch...Nancy
John did have a bit of a relapse with a high temp of 102. The doctors ran all kinds of tests including an EKG. All checked out fine. What they believe happened was that John got off regular schedule with his pain meds resulting in too much discomfort for him to do his breathing exercises. When the last chest tube was removed on Saturday, it left a space. Without John breathing properly, that space collapsed causing his temp to rise and his white cell count to become elevated. Once his pain was back under control, he was able to do his walking, his breathing exercises and his temp went down. So he was discharged on Monday and we've been with my mother ever since.
We've been on an every-three-hour regimen of pain meds, including overnight. It's like having a new-born baby; I feel like I've done everything in that department except push!
Today is John's first day of something resembling food. After only clear fluids for the last 6 days, he can now have "custard-consistency" foods, limited to 1 cup at a time. His first "breakfast" was a parfait of 4 oz. plain Greek-style honey flavored yogurt and 4 oz. of Mott's cinnamon apple sauce. He continues to be reliant on his daily infusion of "Bag-O-Meal" for nutrients which we start around 6 p.m. every night. We initially had set up the infusion at 85 cc's/hour which would allow for about a 12-13 hour feed. But John broke into a heavy sweat and we were advised to cut the rate back. We did so and he was fine. The drawback is that the infusion takes about 16 hours at the slower rate. So we'll gradually increase the rate and see how it goes. The goal over the next few weeks is to increase John's oral intake and decrease the infusion intake.
All in all I am happy to report that he's doing well. I have made appointments with Drs. Taylor (radiologist) and Nestor (oncologist) for next week in Bellingham. I don't think John will need further radiation as pathology showed the tumor was gone, but he will in all likelihood need post-surgical chemo. Dr. Nestor will decide that after consulting with the team at Virginia Mason. Before we leave Seattle we will be seeing Dr. Koehler, a colleague of Dr. Low's, tomorrow for John's first post-op check. If all goes well, we'll be home sometime late Saturday. YIPPEE!!! (My little Jetta's going to be loaded to the gills with cats and their supplies, John and his supplies, me and my liquor...I mean, supplies.)
I figure we're about 3/4 of the way through this gig. I'm praying that any further treatment will get rid of any residual cancer cells once and for all. We could never have come this far without the love and support of you all. For those who could visit, call, pray, send well wishes...you'll never know how much we appreciate and love you. John and I will be working on some jigsaw puzzles and I'll stay in touch...Nancy
Sunday, May 22, 2011
Not Going Home Today
Well there's been a bit of a glitch. John's temp went up to 102 and he wasn't able to perform his "respirometer" exercises (breathing) as well as on Friday. He was also complaining of pain in his right chest area (the side they went in for his surgery) not related to the incision. So after a CT scan, X-ray, blood tests and EKG (just to rule out any heart-related problems), the doctors decided to postpone his discharge. It seems that after the removal of his last chest tube, the void it left collapsed. Just the space collapsed, not his lung. And that can cause a spike in temperature. He's had some Tylenol, took his first post-surgical shower and walked a one-lap stroll down the hall. His temp has come down to 98.8. Now we just need to see if he can maintain a healthy temp without the aid of medication. If so, he may go home tomorrow.
Our Bothell neighbors, Bruce and Laura Scott and daughters, were in yesterday and brought a little gag gift for John: A U.W. Husky #1 sponge hand, a couple of U.W. Husky bumper stickers and two University of Washington pencils. John feels THAT is what caused his "relapse;" Bad-Dog Karma.
To be honest, I'm a bit relieved that they're keeping him for at least another day. I wasn't too excited about getting him "home" and having to bring him back this evening to emergency just to be readmitted. Tomorrow, after all, is another day. I'll keep you all posted...Nancy
Our Bothell neighbors, Bruce and Laura Scott and daughters, were in yesterday and brought a little gag gift for John: A U.W. Husky #1 sponge hand, a couple of U.W. Husky bumper stickers and two University of Washington pencils. John feels THAT is what caused his "relapse;" Bad-Dog Karma.
To be honest, I'm a bit relieved that they're keeping him for at least another day. I wasn't too excited about getting him "home" and having to bring him back this evening to emergency just to be readmitted. Tomorrow, after all, is another day. I'll keep you all posted...Nancy
Saturday, May 21, 2011
Busy Day
Well if all goes as well as it has been, John will indeed be discharged sometime tomorrow. Today was "Nancy Goes to School" Day. We've had an IV pole; two pumps; numerous tubes, bags, syringes, accessories; a pump backpack; etc. delivered to my mother's house for John's at-home "Bag-O-Meal" program. I had to learn how to set up, prime and run the pump. I also had to learn how to flush John's feeding tube as well as clean and dress the area. There are a lot of nurses in my side of the family, including my mother. I never thought I'd be one. Oh the irony...
John's doing very well. His final chest tube was pulled late this morning, so he's footloose and fancy free for his strolls up and down the hall. He's a little more tired and feeling some of the aches and pains that come with surgery a little more, but on the whole...he's super. But then I ALWAYS knew that.
We got his pathology report yesterday afternoon. It was very good. Not super-duper, but VERY good. The cut lines on his esophagus were clean for cancer which is wonderful. The doctors removed a total of 15 lymph nodes from the immediate area where the tumor was as well as from other areas of his chest. Some of those showed cancer cells still active. What this means is that the "Tumor Board" and Virginia Mason will review his results, as will his oncologists at St. Joe's in Bellingham. They will make a recommendation on whether or not John will need post-surgical chemo. I have a hunch they will make that recommendation -- which is not a bad thing. I look at it as kind of insurance; an extra one-two punch to get rid of the disease.
For now we will be staying with my mom until probably Thursday should anyone want to visit. I think it's a good idea to stay close to VM until we know that John can process regular food. (Regular food the consistency of smooth pudding, that is...yum-yum.)
Writing this blog has been very cathartic for me and I've tried to keep things light and interesting. I'll continue to keep you apprised of John's progress as he gets weaned off of his "Bag-O-Meal" regimen and back on solid food. I'm sure there will be some humorous stories to share as we go down this particular path on our cancer journey.
To everyone who has sent email notes, comments, cards, calls, prayers...Thank you. John and I truly have the greatest life because you are all part of it. I'm keeping you all -- even those of you who I have not personally met yet but have sent best wishes -- in my breast pocket, close to my heart. I'll be talking to you...Nancy
John's doing very well. His final chest tube was pulled late this morning, so he's footloose and fancy free for his strolls up and down the hall. He's a little more tired and feeling some of the aches and pains that come with surgery a little more, but on the whole...he's super. But then I ALWAYS knew that.
We got his pathology report yesterday afternoon. It was very good. Not super-duper, but VERY good. The cut lines on his esophagus were clean for cancer which is wonderful. The doctors removed a total of 15 lymph nodes from the immediate area where the tumor was as well as from other areas of his chest. Some of those showed cancer cells still active. What this means is that the "Tumor Board" and Virginia Mason will review his results, as will his oncologists at St. Joe's in Bellingham. They will make a recommendation on whether or not John will need post-surgical chemo. I have a hunch they will make that recommendation -- which is not a bad thing. I look at it as kind of insurance; an extra one-two punch to get rid of the disease.
For now we will be staying with my mom until probably Thursday should anyone want to visit. I think it's a good idea to stay close to VM until we know that John can process regular food. (Regular food the consistency of smooth pudding, that is...yum-yum.)
Writing this blog has been very cathartic for me and I've tried to keep things light and interesting. I'll continue to keep you apprised of John's progress as he gets weaned off of his "Bag-O-Meal" regimen and back on solid food. I'm sure there will be some humorous stories to share as we go down this particular path on our cancer journey.
To everyone who has sent email notes, comments, cards, calls, prayers...Thank you. John and I truly have the greatest life because you are all part of it. I'm keeping you all -- even those of you who I have not personally met yet but have sent best wishes -- in my breast pocket, close to my heart. I'll be talking to you...Nancy
Friday, May 20, 2011
Fewer Tubes and Grape Juice
As of this morning, John is down to just one chest tube (which should come out tomorrow afternoon) and his "Bag-O-Meal" feeding tube (which will be with him for up to four months). All is going great. As I was typing this, Dr. Low came by with the news that John's target discharge day will be Sunday. Wow...Only six days after surgery! John rocks! We'll stay at my mom's for a few days as a "just in case of emergency" access to the hospital. And we are still awaiting the pathology report.
Yesterday was a good day with lots of visitors. Neighbor Laura from Bothell; our niece Emory (Danielle); and long-time friend from WSU, Shannon.
We've been introduced to at-home nutrition procedures. We will be going home with a pump and IV pole so that John can enjoy his "Bag-O-Meals" at home. We'll be taking a class on how to use the pump, flush and clean his feeding tube, etc. For two full days after discharge, John's diet will consist of "Bag-O-Meal" and a limited intake of clear fluids. (No, wine does not qualify.) Then we move to cooked/pureed foods for 7-14 days (think "infant" baby food). No bread. No oatmeal...Very limited fiber. After that...well, I save those menus for later. I'm kind of going into overload with all the new instructions we're starting to get.
So it's all good news John said to thank you all for your support. I say thank you for all your prayers and positive thoughts...Will keep you posted on life at Virginia Mason "Spa and Hotel" and news when we get his path report back...Love to all...Nancy
Yesterday was a good day with lots of visitors. Neighbor Laura from Bothell; our niece Emory (Danielle); and long-time friend from WSU, Shannon.
We've been introduced to at-home nutrition procedures. We will be going home with a pump and IV pole so that John can enjoy his "Bag-O-Meals" at home. We'll be taking a class on how to use the pump, flush and clean his feeding tube, etc. For two full days after discharge, John's diet will consist of "Bag-O-Meal" and a limited intake of clear fluids. (No, wine does not qualify.) Then we move to cooked/pureed foods for 7-14 days (think "infant" baby food). No bread. No oatmeal...Very limited fiber. After that...well, I save those menus for later. I'm kind of going into overload with all the new instructions we're starting to get.
So it's all good news John said to thank you all for your support. I say thank you for all your prayers and positive thoughts...Will keep you posted on life at Virginia Mason "Spa and Hotel" and news when we get his path report back...Love to all...Nancy
Thursday, May 19, 2011
Swallowing Test
This morning John went in for a swallowing test. He had to swallow some barium, a couple of nuclear (wow!) things, some water, etc. etc. etc. They literally turned him upside down and tracked how everything travelled via CAT scan imaging. Dr. Low was very pleased! So hopefully he will be able to have a few sips of water today.
In addition his catheter may come out. They are also planning to remove his epidural line through which he is currently receiving his pain medication. If they do so, he'll receive those meds via his feeding tube.
As I type John is out for his first real walk of the day with his student nurse (from U.W. School of Nursing...Oh my! I hope she makes it back in one piece!). He did five walks up and down the hall yesterday, on which three of those walks he completed three laps each. I continue to be amazed at his attitude and determination. I am so proud of him!
The next "hurdle" will be dependent upon the pathology results which should be in tomorrow. Holding good thoughts for a clean result.
I will let you know about today's events tomorrow. Love and thanks to you all....Nancy
In addition his catheter may come out. They are also planning to remove his epidural line through which he is currently receiving his pain medication. If they do so, he'll receive those meds via his feeding tube.
As I type John is out for his first real walk of the day with his student nurse (from U.W. School of Nursing...Oh my! I hope she makes it back in one piece!). He did five walks up and down the hall yesterday, on which three of those walks he completed three laps each. I continue to be amazed at his attitude and determination. I am so proud of him!
The next "hurdle" will be dependent upon the pathology results which should be in tomorrow. Holding good thoughts for a clean result.
I will let you know about today's events tomorrow. Love and thanks to you all....Nancy
Wednesday, May 18, 2011
Hospital Update...
Yesterday went as written except for a spike in John's temperature; not unusual post-surgery. So after administering a dose of Tylenol (he can't swallow ANYTHING so use your imagination as to how he got his Tylenol) and a few laps up and down the hall, his temp went down.
This a.m. Dr. Low and entourage visited around 8:45 and all were very positive. One of John's chest tubes was removed and as I write, he's having a sponge bath and preparing for his first walk of the day. He still has one chest tube, catheter, nasal tube and IV for pain medication. Cath may come out today; second chest tube perhaps tomorrow; nasal tube perhaps the day after that.
So the next few days will be the same routine (HOPEFULLY): A minimum of 4 or 5 hallway strolls, breathing exercises, more time out of bed in a chair...and no unusual complications. If anyone in the area wants to visit later this week, John should be up for some company. And -- rumor has it -- he's getting a private room. Yea!
Thank you (I say that a lot and it's starting to sound lame...But I truly mean it) for keeping us in your hearts, thoughts and prayers...I'll let you all know how things progress...Nancy
This a.m. Dr. Low and entourage visited around 8:45 and all were very positive. One of John's chest tubes was removed and as I write, he's having a sponge bath and preparing for his first walk of the day. He still has one chest tube, catheter, nasal tube and IV for pain medication. Cath may come out today; second chest tube perhaps tomorrow; nasal tube perhaps the day after that.
So the next few days will be the same routine (HOPEFULLY): A minimum of 4 or 5 hallway strolls, breathing exercises, more time out of bed in a chair...and no unusual complications. If anyone in the area wants to visit later this week, John should be up for some company. And -- rumor has it -- he's getting a private room. Yea!
Thank you (I say that a lot and it's starting to sound lame...But I truly mean it) for keeping us in your hearts, thoughts and prayers...I'll let you all know how things progress...Nancy
Tuesday, May 17, 2011
The Day After...
After a 7-plus-hour procedure and a 15-plus-hour wait, John came through surgery with flying colors. Dr. Low came out to the waiting room to deliver the good news that John had remained stable throughout the entire procedure and he has every confidence that John will convalesce well. He said that John's positive attitude -- which has actually been a huge support for me through these last few months -- is indicative of a patient who will recover well from this procedure. We expect a pathology report in a few days which will tell doctors whether or not John will need any post-operative chemo. We are, naturally, hoping results will be negative.
As I write this, John's having his first post-surgical "meal:" A high-calorie breakfast/lunch/dinner in a bag. Because his new esophagus-made-from-stomach will take some time to heal, he will be enjoying his "Bag-O-Meals" via a feed tube connected directly into his small intestine for a while. (I wonder if Martha Stewart has any recipes?) He is now in a regular hospital room after spending last night in post-surgical CCU. His nurse, Jeanine, is great. (For single men out there, she's 45, extremely attractive smart...and I would highly recommend a coffee date.) It's still too soon to know how long he'll be in hospital, but I would guess it will be at least 10 days.
Bless you all and thank you for your care. Thank you to Laura, our neighbor and best-friend-ever from Bothell for staying with me all day yesterday while waiting. To Gail (thanks for the jigsaw puzzle -- it will go to the Bellingham Cancer Center after we put it together); Birch Bay-neighbor Sunny (thanks for the Cougar -- it's gracing John's hospital room); sister-in-law Linda and John's brother Ray for your visits, help and support. Thanks to Mike and Kathy Wright for your gift. (John hasn't opened it yet...He will this afternoon when he wakes up from his siesta.) And thanks to my Mom who came down and wiled away some time with me during the long hours yesterday. Besides being my Mom, I'd pick you for a mother-in-law any day. John's lucky to have you. Your love and support means everything. And for everyone who has been praying, lighting incense, shaking rattles, chanting...whatever...Thank you! I'll keep you posted...Nancy
As I write this, John's having his first post-surgical "meal:" A high-calorie breakfast/lunch/dinner in a bag. Because his new esophagus-made-from-stomach will take some time to heal, he will be enjoying his "Bag-O-Meals" via a feed tube connected directly into his small intestine for a while. (I wonder if Martha Stewart has any recipes?) He is now in a regular hospital room after spending last night in post-surgical CCU. His nurse, Jeanine, is great. (For single men out there, she's 45, extremely attractive smart...and I would highly recommend a coffee date.) It's still too soon to know how long he'll be in hospital, but I would guess it will be at least 10 days.
Bless you all and thank you for your care. Thank you to Laura, our neighbor and best-friend-ever from Bothell for staying with me all day yesterday while waiting. To Gail (thanks for the jigsaw puzzle -- it will go to the Bellingham Cancer Center after we put it together); Birch Bay-neighbor Sunny (thanks for the Cougar -- it's gracing John's hospital room); sister-in-law Linda and John's brother Ray for your visits, help and support. Thanks to Mike and Kathy Wright for your gift. (John hasn't opened it yet...He will this afternoon when he wakes up from his siesta.) And thanks to my Mom who came down and wiled away some time with me during the long hours yesterday. Besides being my Mom, I'd pick you for a mother-in-law any day. John's lucky to have you. Your love and support means everything. And for everyone who has been praying, lighting incense, shaking rattles, chanting...whatever...Thank you! I'll keep you posted...Nancy
Sunday, May 15, 2011
Surgery Tomorrow
Well we're finally down to crunch time. Packing the cats and heading to "Grandma's" house this morning. John will start his pre-surgery prep this afternoon. Not unlike getting ready for a colonoscopy, only much less "beverage" to take. Just one small bottle. Breakfast this a.m. will be scrambled eggs and toast. I feel kind of bad making such a mundane meal since it will be a while before John gets to eat real food.
It's a drizzly morning with rain in the forecast for a few days. But the bergenia in our front yard is in full pink bloom. The dogwood and ginko trees are nicely leafing out. And I harvested the first crop of rhubarb which I'll take to Mom's and make a batch of sauce for the two of us to have in the mornings for breakfast.
I have every confidence that John's surgery will go well. After all, he has all of you rooting him on, praying for him and working on those jigsaw puzzles, sending "good juju." Since John's procedure is a long one and he'll be in recovery for a while, I won't have any concrete info until late tomorrow. So I'll probably be posting either very late Monday night or on Tuesday. Thank you for your friendship and support. You are all appreciated more than I can ever say. As Peter Pan said, "Come, everybody. Here we go!"....Nancy
It's a drizzly morning with rain in the forecast for a few days. But the bergenia in our front yard is in full pink bloom. The dogwood and ginko trees are nicely leafing out. And I harvested the first crop of rhubarb which I'll take to Mom's and make a batch of sauce for the two of us to have in the mornings for breakfast.
I have every confidence that John's surgery will go well. After all, he has all of you rooting him on, praying for him and working on those jigsaw puzzles, sending "good juju." Since John's procedure is a long one and he'll be in recovery for a while, I won't have any concrete info until late tomorrow. So I'll probably be posting either very late Monday night or on Tuesday. Thank you for your friendship and support. You are all appreciated more than I can ever say. As Peter Pan said, "Come, everybody. Here we go!"....Nancy
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