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New to site - Diagosed 8/11 - treatment nearly complete - SLEEP PROBEMS ABOUND

Raleighdon's picture
Raleighdon
Posts: 12
Joined: Jan 2012

Hi, I'm Donald Boothby, aka Raleighdon. I am 61 years old, an endurance cyclist (average over 10,000 miles per year) and love old Raleigh bikes, hence the name. I was diagosed with EC (Stage IV) on August 11th. Survived two 5-day inpatient chemo stays 3 weeks apart commencing on 8/29 (very fast I'm told to be able to get diagnosed and start treatment) and that was coupled with 25 radiation treatments. On October 26th I entered Swedish Hospital for an esophagectom and stomach pull up, with a head/neck surgeon also brought in to sweep the lymph nodes out of the right side of my neck. What started out as a 10-15 day stay turned into a 52-day hospitalization from Hell as I developed chyle leaks that took three surgeries to get stopped, in addition to another surgery where we attempted to install a Denver Shunt (that failed, too). The last surgery was on Dec. 5 and I was discharged on the 16th. I managed to maintain my weight through chemo/radiation, but am now less than 135# (started out at 151#) and my legs are like spaghetti. I have been doing a little bit on the bike, 10 minutes a day in the basement, and 2 very short very flat rides outside over the weekend when the weather was nice and Mimi (wife of 33 years) was with me to make sure I had help if something went badly. It didn't. I'm slowly gaining strength back, though I still have only about half of my voice (my job requires talking on the phone a lot during the day), I can't deal with any stress (gee - insurance claims aren't stressful are they?) and am just starting to feel like my head is starting to clear.

I've read back through some of the discussion threads here, and am not real encouraged by a lot of what I read, but then, I know our survival rate isn't very good, so I'm not surprised. The main difficulties I'm having right now are 1) my appetite and ability to get enough calories into me, and 2) sleeping.

I think our nutrition plan is starting to work as I'm down to 12-hour feeding cycle which allows me to actually get hungry. The sleeping part, though, is a real pain. I saw a recent discussion about elevated beds. We're looking at what to do and how to do this without Mimi having to sleep at an angle or me sliding off the wedge and then end up flat and at risk of aspiration. Looking for some ideas about how others sleep, what the elevation solutions are that you've tried and how well each work. I've got a soft wedge pillow and built myself a sort of nest with several other pillows. Can't sleep on my side, but can roll about half of the side without any problem.

Any feedback will be appreciated.

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Hi Don. Sounds like you've had a pretty rough time recently. Try not to be discouraged by the grim statistics. It's tough but I try to concentrate on how fortunate I am. I am coming up on my one year mark since diagnosis. I'm planning on celebrating a little that day.

I sleep on a wedge myself and had the same problem of sliding off. I put a blanket over the wedge running long ways down the bed to give it a rougher surface. I also put a pillow under my bottom as kind of a door stop. Sometimes I still slide down but it usually does me pretty well. As for your appetite and getting calories into you. The big thing that helps me is to eat small meals every couple of hours. I never eat enough to get full but every couple of hours I try to eat a little something. Even if it is just a granola bar.

Best of luck and welcome to our group!

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

Don,

I sleep on an adjustable bed that allows me to raise the head and foot of the bed. This really helps with the sliding down the incline while sleeping. Since my wife is much shorter than I am; (I am 5' 5" and she is 4' 10"), she sleeps farther down the bed than I do, and therefore is not as "inclined" as I am.

I have also seen adjustable beds that are two independent units. They are the size of a king size bed but are actually made up of two twin sized beds. One side is adjustable and one side is a standard bed, or both sides can be independently adjustable.

I know these kind of solutions can be a bit expensive but a good night sleep is a wonderful thing.

Here is a link to an example

This is not where I purchased mine but it gives a good example of options. I specifically looked for a bed with a Leggett and Platt base because my research indicated they had an excellent durability and repair ability profile.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Raleighdon's picture
Raleighdon
Posts: 12
Joined: Jan 2012

Paul: Thsnks for the comments, they are really helpful. Being new to this, I am really reluctant to drop $3000 on a new bed, but recognize that this may be the only way, in the long term, that we can continue to enjoy sleeping in the same bed. As it is, I have a conglomeration of pillows arranged that keep me elevated. I try not to eat after 6 pm (we go to bed about 9) and that helps. I keep experimenting with various angles and pitches, but nothing, so far, is comfortable and I worry about developing problems with my spine, which is distended into some pretty unnatural angles when I do anything other than sleep on my back. At just slightly less than a month out of the hospital, I'm still in the initial healing processes and lots of little aches and pains abound, so won't do anything drastic probably for several months, but I think the adjustable bed is probably, in the long term, the most positive of all solutions.

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Welome and wow- you really are an endurance rider at those miles. I used to ride high mileage as well, but then had an injury. MY husband who has EC, also is a long distance runner and has many of the same concerns. By the way, Are you from Denver? I saw you mentioned Swedish Hospital. We lived in Denver many years, my husband Keith grew up there. He's also a doctor and trained there too at the U of C. Anyway, we invested in a sleep number bed and we bought a king which is actually 2 twin beds that are side by side and then your wife doesn't have to raise her side at all. My husband was the one who was having trouble sleeping at the full 30 degrees recommended but we've lowered it about 10 degrees and for him now it is comfortable. He just wants to still sleep on his side so we got that fixed and we like the bed now. As for snacks and sports- Keith is figuring that out too. cashews, almonds, walnuts, PB ( he'll just eat it out of the jar). He has to be cautious about dumping so protein drinks are out for him and so are ice cream and the culprits that are known to trigger dumping. Cookies with lots of nuts too or nutrition bars that are low carb. He's still 20 pounds underweight. One dish that I cook that is calorie dense and he loves it is this: whole grain pasta with grilled chicken or fish, mix with sauteed swiss chard, garlic, garbonzo beans, and top with shredded parmesan cheese and drench in olive oil. I cook that up and he has a big serving that will last 2 days and he eats several small meals of that a day. Good flavor and has some fiber, protein, carbs and healthy fats. So Donald, hope this helps and happy cycling. If you are from Denver, we used to ride all over the canal.
Cora

Raleighdon's picture
Raleighdon
Posts: 12
Joined: Jan 2012

Thanks, Cora, I appreciate your comments. Nope, not from Denver. We are in Seattle and I ride mostly with the Seattle Intrnational Randonneurs, a club that hosts rides ranging from 62 miles to 800 miles, all timed events and have been doing this since 2004. Before that I was a pretty casual rider. Presently, I'm only able to ride about 5-7 miles on very6 flat surface, as my endurance after 52 days in the hospital is totally shot. I'll look at the Sleep Number bed, not sure if they have a split queen or not. I'm not sure we can accommodate a king in our relatively small bedroom. I looked at elevating frames, but they just don't seem to be a very good solution.

As far as snacks go, I'm still doing tube feeding from 8:00 pm to 6:00 am, and eating as much as I can tolerate during the day. My energy levels are pretty limited and sometimes I just plain don't feel very motivated (by hunger?) to get up and fix something to eat. I am just getting to be able to tolerate solid foods at all, but haven't advanced to whole nuts and grains yet. Peanut butter, almond butter and hazlenut butter are all good, and I do use "power shakes". I haven't experienced dumping yet, but get severe abdominal cramps that come in rhythmic waves right after I eat. Hopefully that will go away soon.

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Don:

I had my Esophagectomy in September 2011, and I can tell you it'll take a fair amount of trial and error for you to figure what works for you and what doesn't, diet-wise. I was unable to tolerate smoothies or "power shakes", which caused cramping and other unpleasant dumping symptoms, and I still stay away from them. The nutritionist at the hospital said it was the sugars in those foods, which continue to be a no-no to this day.

I think you'll find that your system will be much more sensitive to sugars and other things now but will tolerate them better as your recovery continues. For example, I was lactose intolerant for 10 weeks or so, which I never was before, but that has gone away now. But even after 16 weeks if I eat more than just a little sugar I get really intense stomach aches/cramps, and it lasts for a couple of hours. That includes ice cream and Carnation Instant Breakfast, among other things. I was surprised how much sugar is in certain foods, but that's just part of this whole EC journey. Another example: at pot-luck a Christmas party I enjoyed small portions of several yummy foods, then waited an hour or so and had a small slice of my wife’s chocolate cake. Then some evil woman (  ) arrived with some fabulous dark chocolate “bark” with cranberries & nuts…it was unbelievable! Well, being a, incorrigible chocaholic I ate 2 fairly good sized pieces and about 20 minutes later I was doubled over in pain and had to lie down in the host’s back room for over an hour before I could even stumble out to the car so my wife could drive me home. Big mistake, but lesson learned.

You should of course follow the advice of your trusted medical team, but I'd suggest you take a look at UPMC's recommendations at:
http://www.upmc.com/healthatoz/patienteducation/g/pages/dietafteranesophagectomy.aspx
and
http://www.upmc.com/healthatoz/patienteducation/n/pages/dumpingsyndromediet.aspx.

On the advice of my nutritionist, and William Marshall and others on this board, I followed the UPMC diet fairly closely for the first 4 weeks and continued to consider their guidelines after that, and I think it minimized my problems. And there is light at the end of the tunnel! I can eat almost anything I want now - in moderation - even some things with sugars in them.

Good luck, and expect “2 steps forward, and 1 step back” to be the rule for the next few months. It sucks sometimes but, again quoting William, it’s better than having cancer!

Bob
T1aN0M0
MIE 9/23/11

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

We had no luck with pillows, and more pillows, wedges, tried several of those. And the Bed Genie! Looks great in the ads, but no, it is in storage with all of the other items! Since the adjustable beds were so expensive I really searched around. Costco carries Sleep Science and you can get a split king. You each have a cordless remote to control each side. We have had ours for over a year now and are doing well with it. Being able to elevate your legs really helps to keep from sliding down. Costco has $500 off right now and that includes delivery and set up. That makes it one of the lowest priced fully adjustable beds with memory foam mattress. There are many brands now to choose from, it's just finding one that you like and within the budget you are comfortable with.

You can get a hospital bed, with a prescription from your doctor, that insurance will usually cover. If you want a furniture look, or one to match for your wife, or husband, insurance will not cover that. Hope you get a good night's sleep soon. Linda

ABC321's picture
ABC321
Posts: 52
Joined: Oct 2011

Hi Donald,
Im just interested to know why you choose Sweden for your operation? Is ther a particular Dr or Hospital you were drwan to?
Rgds
Steve

Raleighdon's picture
Raleighdon
Posts: 12
Joined: Jan 2012

When I received my diagnosis, I went back to my PCP who advised me he'd already been in tough with Henry Kaplan, who was expecting my call and wanted to see me right away. We called and were told he could squeeze me in sometime after Labor Day (this was on Aug. 12 - a friday at 3:15 pm). We advised the scheduler what Schuster had told us. Less than 5 minutes later we had a callback with an appointment for 6:00 pm Monday night. Dr. Kaplan has been an excellent advocate for me. I was also referred to Dr. Brian Louie (google him and watch the youtube video). I also got referred to Dr. Vivek Mehta for radiation. The three of them worked collaboratively with me to develop a treatment plan that would face this cancer aggressively and that was what I wanted. I did get a second opinion from another highly regarded thorasic surgeon in the area, Dr. Pellegrini at the UofW, who confirmed I had a great team to work with and gave Mimi and some excellent advice. 2 weeks after diagnosis, I was IN TREATMENT with my first chemo and radiation. I have liked Swedish for many years, and my experience throughout this ordeal only confirmed my faith in them as outstanding caregivers.

I just re-read your post; the surgery isn't in Sweden, it is in Seattle, my home town

froggerjen
Posts: 29
Joined: Jan 2012

I'm Jen, and new to the board as well. My Dad is scheduled for surgery next Tuesday, the IL procedure. I sure appreciate everyone's comments on the sleeping issues, as no one in my family had a clue about any of this. Don, you sound like a real fighter and are so well-informed! Wishing you all the best..
Jen

Raleighdon's picture
Raleighdon
Posts: 12
Joined: Jan 2012

Jen - Thanks. I don't know that I'm so well informed, but as I lay in the hospital for 52 days, Mimi was out there doing a lot of research for us, and we've certainly learned a lot. I am still very new to this new life of mine and wish your dad the best in his surgery next week.

You are right in one thing, I am a fighter. I went into this in extremely good physical condition and am doing everything I can got get myself back to a fit state. Good diet, plenty of exercise and lots of good rest. I think the thing I have learned the most in the past few months is that there is just about nothing that is worth getting too upset about. This is huge in my stress-filled life.

Don

trainscotch
Posts: 10
Joined: Aug 2013

First, Don hang in there. I'm a year behind you but with the same problems. Little ones compared to what some people have gone through.

My question to all is what angle did you doctor recommend elevating your bed?  I started with the wedge, if my geometry is correct it should be 22.5 degrees. I kept falling off, so we bit the bullet and got a split adjustable bed, but I slide down to the crease. I have it at 26 degrees--I'm a model train person so I have a digital grade gauge and can check the elevation.

I have seen elevations from ranging from 20 to 30 degrees. I could just lower the elevation till I don't slide, but as everyone knows that bile in the back of the throat is not pleasant.

So what have you been told to use?

Thanks

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