One week after the MIE: good and bad

ArchTB

It's been one week now since Tom was admitted to get his surgery done. We are still in the hospital, and would probably be here for few more days.

First, some good news. No, GREAT news! The pathology report indicated no evidence of disease in any of the removed tissue, including lymph nodes. Yay! All indicators (blood pressure, red/white cells, heart rate) are good. Lungs are clear.

Tom had quite a bit of fluids coming out and had to keep a nose tube for a week, but he got it out this morning and is extremely happy about it! Now most of his tubes are out, he only has a feeding tube and an IV for heart medication. Swallow test is later today.

Now, some concerns.

Everyday around 3-4 pm, he gets chills and his neck and back start hurting really bad. But no temperature, no other abnormalities. A lady on the same floor with us said that her husband who had an open Ivor Lewis has exactly the same problem. We have not managed to get any explanation from the doctors on what might be causing it.

His feet are still very swollen, which I know is typical after surgery. But I am worried that the color is becoming red-blue-ish. Noone else seem to be concerned with that though, including Tom himself.

He is still pretty weak, although he walks the required minimum of 1 mile or more a day and does his exercises. He is definitely not even close to driving around and doing shopping as William did after his surgery.

Olya

Husband: Tom 37 y.o. T3 N1 M0

Joel C

Hi Olya,
Let me start by
Hi Olya,

Let me start by expressing my congratulations on the clean pathology. Having a complete response to the pre surgery treatments is absolutely fantastic news.

It sounds like Tom is in a similar situation that I was in six months ago. My stage was T2N1M0 adencarcinoma and had my MIE on 11/18/2010 (49 years old). The one lymph node that tested positive during staging and the tumor came back clean at pathology. Like Tom I had the stomach drain tube in my nose for 8 days and finally had it removed when I threatened to pull it out myself. That tube was one of the most uncomfortable parts of my recovery. I did have a good amount of pain in my back where the large tube came out to drain my chest cavity. I did not have the chills but several times a day I felt very hot but like Tom had no fever. I also had swelling of the feet and hands that was caused by all the fluids used during the surgery. It took a couple of weeks for the swelling to completely disappear The fact that he is up walking a mile a day says a lot about the shape he was in before the surgery. It sounds like Tom is doing great. Don’t get discouraged because he feels tired or if there a few bumps in the road, you have to remember that he has been thru a huge surgery and it’s going to be long recovery. At six months out I’m back to work and feeling strong. Tom will be there in a few months too.

Best of luck with the swallow test today. After Tom gets the all clear with the swallow test he is not going to believe how great that Italian ice tastes.

Joel

Hooker

Hi Olya
I am about 5 weeks out of surgery did not have the back pain but I still get cold when just sitting around maybe have to cover up with a throw I figured it was due to the amount of weight I had loss and not being as physically active thanks Sam

ArchTB

Joel C said:

Hi Olya,
Let me start by
Hi Olya,

Let me start by expressing my congratulations on the clean pathology. Having a complete response to the pre surgery treatments is absolutely fantastic news.

It sounds like Tom is in a similar situation that I was in six months ago. My stage was T2N1M0 adencarcinoma and had my MIE on 11/18/2010 (49 years old). The one lymph node that tested positive during staging and the tumor came back clean at pathology. Like Tom I had the stomach drain tube in my nose for 8 days and finally had it removed when I threatened to pull it out myself. That tube was one of the most uncomfortable parts of my recovery. I did have a good amount of pain in my back where the large tube came out to drain my chest cavity. I did not have the chills but several times a day I felt very hot but like Tom had no fever. I also had swelling of the feet and hands that was caused by all the fluids used during the surgery. It took a couple of weeks for the swelling to completely disappear The fact that he is up walking a mile a day says a lot about the shape he was in before the surgery. It sounds like Tom is doing great. Don’t get discouraged because he feels tired or if there a few bumps in the road, you have to remember that he has been thru a huge surgery and it’s going to be long recovery. At six months out I’m back to work and feeling strong. Tom will be there in a few months too.

Best of luck with the swallow test today. After Tom gets the all clear with the swallow test he is not going to believe how great that Italian ice tastes.

Joel

He is drooling already!
Thanks for sharing your experience Joel. We actually just got back from the testing lab - his swallow test went well. He is already drooling thinking about jello and italian ice, even the disgusting chalky paste he had to drink tasted good to him.

ArchTB

Hooker said:

Hi Olya
I am about 5 weeks out of surgery did not have the back pain but I still get cold when just sitting around maybe have to cover up with a throw I figured it was due to the amount of weight I had loss and not being as physically active thanks Sam

Fast recovery to you!
Thanks, Sam. How are you doing in general after the surgery? Are you mostly up and moving, or sitting, or laying down? Are you still taking any pain meds? How about food and what type?

Sorry for so many questions, but since you are just a step ahead of us, it would be good to know what to expect.

Wishing you fast recovery,

Olya

Hooker

ArchTB said:

Fast recovery to you!
Thanks, Sam. How are you doing in general after the surgery? Are you mostly up and moving, or sitting, or laying down? Are you still taking any pain meds? How about food and what type?

Sorry for so many questions, but since you are just a step ahead of us, it would be good to know what to expect.

Wishing you fast recovery,

Olya

Hi Olya
I am feeling reasonbly good up until starting this cleanup chemo. I was very lucky Iwas out of the hospital in 7 days. On the next day after I got home I did not hesitate to go walking at a park near our house as long as my stomach was not bothering me to bad we usually go everyday started with 30min a day now an hour a day. I take one pain pill and 2 ativan at night to help me sleep, never had problems sleeping before but the cancer really gets me thinking at night, the drs said it would help with anxiety. When I got home I stayed away from meats of any kind and also anything wiyh sugar like ensure, doin glycerna now and it still has like 220 calories in it. Stay away from acidy foods caffeine, citrus, chocolate. Food is basically trial and error for most people what might work for you might not work for me. After surgery I tried to keep each meal between 8 to 10 ounces gradually increasing as his stomach can handle it. Potatoes, Especially sweet potatoes are good in calories, scrambled eggs, instant grits, corn not creme style some people become lactose intolerant, soups that can be easily chewed or puraid. I started with chicken and fish grilled or baked about week and half ago just make sure they are moist and cut into tiny pieces. I would stay away from red meat for about a year it can take the body up to 2 weeks to digest something we dont need in the way. I also went to a health food store and found whey protein powder lowest in sugar mix it with soy milk and certain frozen fruits or bananas for xtra calories.I hope this was helpful. I also log what i eat and drink and my bowel movements to help see what might bother me. Try not drinking until end of meal so that your not feeling up on liquids. Hope I was helpful for a newbie still learning my self. Sam

Gatoraid

Congradulations
It sounds to me like your news is all good. The chills are most likely because of weakness. Remember, this was very major surgery. The fact that his results were clean means that post surgery chemo will most likely not be required. The next few weeks will require him to be fed through the connection to his stomach and he'll work his way from liquid and soft foods (mashed potatoes and gravy, italian ice) to regular food after a month. I kept under a blanket for the first two months because my body was weak from all the chemo and surgery.

Keep your chin up...another month or two and you'll be amazed at the progress!

Alaska_Kim

ArchTB said:

Fast recovery to you!
Thanks, Sam. How are you doing in general after the surgery? Are you mostly up and moving, or sitting, or laying down? Are you still taking any pain meds? How about food and what type?

Sorry for so many questions, but since you are just a step ahead of us, it would be good to know what to expect.

Wishing you fast recovery,

Olya

Hi.
It's been almost 7 weeks
Hi.
It's been almost 7 weeks since my husbands MIE surgery. He gets stronger every day. He has been very lucky in that he has been able to eat pretty much anything he has tried including milk products without consequence except baked French Fries and possibly barbecue sauce. He had terrible stomach cramps after both of those, but that was it. We have avoided fried foods of any kind so far and have stuck to ground turkey and chicken in small pieces and gravy for moisture. He is still learning to avoid drinking liquids while eating so he doesn't fill up too fast. I also write everything down that he eats and drinks and the calories so I can be sure he is getting enough throuout the day. Unfortunately, he had a bit of a set back with eating because food started getting stuck and he would throw up everything he ate unless it was liquid. He has his esophagus stretched last Friday. His GI doc. Went real conservative not wanting to risk a tear by stretching too much. We will go back for a second streching in 2 weeks. Until then, my husband is back on a liquid only diet and is not a happy camper about it, but at least he doesn't throw up any more! It has been a challenge to get his calories in because he started post operative chemotherapy last week and one drug, the Oxaliplatin has made him suseptible to cold objects. Frozen smoothies and protein shakes are out and not nearly as appetizing luke warm. it is a lot of trial and error. He keeps telling me if he doesnt try it, he won't know if he will have a reaction or not.

Good luck, it does get better and easier as they recover. Kim