The Colon Club

It's been somewhat of a difficult adjustment having my wife back because she's awake at night and sleeping during the day so I wind up getting less sleep. Work has been quite busy as well and looks like it is going to get busier.

I feel quite good right now as I can eat and drink cold things again (I had a strawberry and honey smoothie last night). I still have neuropathy in my hands but it isn't as bad as it was a couple of days ago. I have lost some of my balance muscles as I tried the tree pose and had some difficulty with it. This is a pretty basic balance pose. I definitely need to do more balance stuff as it's the thing that helps you avoid accidents. Speaking of which I walked into a door the other night. My wife closed a door which is normally open and it was completely dark and I walked into it. Fortunately I have a hard head and it was a soft door.

The scar on the forearm from falling down the stairs is healing nicely and I leave it uncovered now, though I often wear a long-sleeve shirt just in case.

One annoyance in the office is people coming in to chat for a while with colds. Most folks know that I'm on chemo and that I'm immunocompromised and I'd much rather get an email if someone is mildly sick. But people want to come in and chat from time to time. That's the downside of being in the office. I do have a slight cold (always worried about spread to lungs when I cough) but it doesn't slow me down.

I'm going to take at least another week off from chemo. I could probably do it but I have a lot of physical work and also a religious ceremony later this month and it would be a bit of a pain to do it just after an infusion. Right now I feel like I could definitely do #5. But it would be even nicer to have another week.

I ran 0.4 miles today while waiting for the Stealth Belt. I ordered it a few days ago and it hasn't shipped yet so it seems like they make them to order. I'll just keep it short and slow for now. I have bought a couple of pairs of running shoes, shorts and shirts. I ordered the XL shirts to cover the bag. I usually run in M or L but they leave a little showing and I'd rather not show it in the gym. I do tuck it into my shorts when I run but usually leave it out in the gym.

NHMike wrote:... I have lost some of my balance muscles as I tried the tree pose and had some difficulty with it. This is a pretty basic balance pose. I definitely need to do more balance stuff as it's the thing that helps you avoid accidents....

The Lenox Hill Hospital has a website with some documents on preventing falls. On the webpage below there is a link to download a document entitled "Simple Balance Exercises" and another link to download "Keep your Balance".

They also have a video entitled, "Planning for an Unplanned Trip"

Fall and Injury Prevention
https://www.northwell.edu/about/our-organization/office-community-and-public-health/community-engagement/preventfalls

O Stoma Mia wrote:

NHMike wrote:... I have lost some of my balance muscles as I tried the tree pose and had some difficulty with it. This is a pretty basic balance pose. I definitely need to do more balance stuff as it's the thing that helps you avoid accidents....

The Lenox Hill Hospital has a website with some documents on preventing falls. On the webpage below there is a link to download a document entitled "Simple Balance Exercises" and another link to download "Keep your Balance".

They also have a video entitled, "Planning for an Unplanned Trip"

Fall and Injury Prevention
https://www.northwell.edu/about/our-organization/office-community-and-public-health/community-engagement/preventfalls

Thanks, but I was looking for stuff that's more like this: https://www.youtube.com/watch?v=EcK8btsPN9Q

I'd love to be able to do all of these: https://www.youtube.com/watch?v=5NJIkUmh_h0&t=6s but it would take some work and I don't know that I'd ever be able to do the twisty.

I generally have plenty of core strength and have some ability to fall but the walking downstairs to the bathroom in the dark is challenging. One solution would be to replace the upstairs toilet (it works but uses a lot of water and doesn't flush well). Another solution would be a nightlight - unfortunately we don't have an outlet along the stairs, at the top or bottom.

NHMike wrote:... Another solution would be a nightlight - unfortunately we don't have an outlet along the stairs, at the top or bottom.

You could buy two battery-operated motion-sensor night lights, one for the top of the stairs and one for the bottom of the stairs. That's what I have here. I also have 3 plug-in night lights in the hallway sockets.

https://www.amazon.com/URPOWER-Operated-Wireless-Nightlight-Portable/dp/B074DTSQF7/ref=sr_1_5?ie=UTF8&qid=1521344693&sr=8-5&keywords=battery+operated+motion+detector+light&dpID=412ywb%252BZQvL&preST=_SY300_QL70_&dpSrc=srch

Met with the backup oncologist. We decided to stay with the Xeloda and skip a cycle on the Oxaliplatin. She asked how far the neuropathy was and I indicated up to the second knuckle but I feel a bit of in in the upper palms right now. She said that was a concern as the farther into the hand it goes, the more risk for longer-term problems. So I'm on Xeloda for a cycle and then probably back on Oxaliplatin in three weeks. Hopefully some or all of the neuropathy dissipates by then. We have another snowstorm tonight and then we should be out of the woods weather-wise.

I called the Stealth Belt folks asking where my order was as it's been over a week and I hadn't heard anything and they said that my order would ship May 1. If all goes according to schedule, that would leave me with about two months' of use so I asked if they had other products that could be used for running that ship right away and they suggested the "Pro" model so I changed my order to that model and that should ship right away. So maybe I get three-plus months of use out of it for $100. I guess running is worth it.

I ran 1 mile on Monday and 1.3 yesterday. About to go down to the gym for a run. Work has been very busy and that's cramping my workouts.

Update: got in 2 miles and a bit of weights. The limiting factor is generally time. Tonight's workout is laundry. Top speed was 5.8 MPH which I consider slow. But I think I'll stay under or at 6.0 MPH for now until I can be sure of sufficient support for the illeostomy bag.

It must be really nice to start running again!

I ordered and got a Comfyzz belt, but I am still waiting to use it. Now I have 8 more days on antibiotics and perhaps I should just go.

Claudia

Ran 3.2 miles, and did some barbell exercises though I was wiped out doing them. It looks like shoveling isn't needed. We got about 3 inches of snow and it's 45 degrees outside so I'd guess that it will be all melted by the time I get home. Even if it isn't, it will melt in the next day or two.

I need to do a lot more work on the weights as I've lost strength not working out the two weeks after infusions.

The lack of cold sensitivity means that I can drink cold water and I'm drinking quite a bit of it - to the point where urine output is far lighter in color than before. I got a pair of 40 oz vacuum flasks from Costco and it makes it a lot easier to get my needed water intake.

I experienced that throat thing you described at end of first round of chemo today. I immediately noticed I could breathe, remembered you said it worked out fine and relaxed.
Thank you for the details,
Susan

Caat55 wrote:I experienced that throat thing you described at end of first round of chemo today. I immediately noticed I could breathe, remembered you said it worked out fine and relaxed.
Thank you for the details,
Susan

The Oxaliplatin is tough, particularly if it's cold outside where you are. I found that wearing something that blocked my mouth and nose helped quite a bit when going outside. I bought a couple of balaclavas which help - though I get a lot of odd looks. Remember to tell your doctor what you're experiencing, especially if it starts to get out of hand.

No time for a workout today but I did some household cleaning which involved throwing out a few mattresses and lifting a number of fairly heavy things. I'm squeezed between work and chores. I am thankful that I can work effectively and do chores though. If I had the Oxaliplatin, I'm spend half the day in bed.

Seriously Mike I don't know how people on Oxaliplatin make it in truly cold weather. It was 40 degrees outside and I walked up to my neighbors for our dog hike. It is 3 large lots. By the time I got there I was breathing like I had croup, throat was swollen. I put my gloved hands over my mouth and breathed in through my nose which now felt like an ice cube. Wow, it was scary but I knew I would be fine. Took a few minutes to settle down and then we continued. Any cold causes the pins and needle feeling.
Susan

Caat55 wrote:Seriously Mike I don't know how people on Oxaliplatin make it in truly cold weather. It was 40 degrees outside and I walked up to my neighbors for our dog hike. It is 3 large lots. By the time I got there I was breathing like I had croup, throat was swollen. I put my gloved hands over my mouth and breathed in through my nose which now felt like an ice cube. Wow, it was scary but I knew I would be fine. Took a few minutes to settle down and then we continued. Any cold causes the pins and needle feeling.
Susan

It is very hard and sometimes you just deal with the pain. I drove myself home after an infusion in the middle of a snowstorm and my hands hurt the whole ride home (fortunately it was only 15 minutes). I found out that Toyota doesn't make any cars with heated steering wheels - I was contemplating replacing my car for something with a heated steering wheel. I know people that just stay indoors until the cold sensitivity goes away and that can be days. There is a picture of me dressed for cold weather somewhere on this thread. Basically there's no exposed skin anywhere. It does look like winter is truly over in Southern NH and things should be better.

The best that people say is take things one day at a time.

I pretty much just stayed indoors for the first 3-4 days after infusion. My apartment is very warm and the only time I dealt with cold sensitivity was when I accidentally grabbed silverware or ran cold water on my fingers. Of course, for me the cold sensitivity lasted a couple weeks so it was hard when I had to go outside again. I got a balaclava as well which helped. No funny looks for me because lots of people in NYC wear them.

I've been following your thread and I find the difference in the treatment protocol you are on compared to my husband's very interesting. You have a 3B diagnosis and are doing, what, 12 rounds of CAPEOX?

My husband was/is 4A but he only was on 4 cycles of CAPEOX total. His oncologist said that there are two schools of thought on this. One is more conservative about chemo, so to speak, and the other camp is the opposite. I was (still am) not the biggest fan of chemo (to say the least) but I sometimes wonder if my husband was on it enough, especially because he has not stuck to a healthy diet. My husband does not seem worried, however.

mpbser wrote:I've been following your thread and I find the difference in the treatment protocol you are on compared to my husband's very interesting. You have a 3B diagnosis and are doing, what, 12 rounds of CAPEOX?

My husband was/is 4A but he only was on 4 cycles of CAPEOX total. His oncologist said that there are two schools of thought on this. One is more conservative about chemo, so to speak, and the other camp is the opposite. I was (still am) not the biggest fan of chemo (to say the least) but I sometimes wonder if my husband was on it enough, especially because he has not stuck to a healthy diet. My husband does not seem worried, however.

My program is 8 rounds of CAPOX. The 12 rounds is for Folfox. They work out to the same period of time - 24 weeks. The CAPOX is 3-week cycles, the FOLFOX is 2-week cycles. My DFCI Oncologist said 4 minimum, 8 maximum, 6 is the sweetspot. I've seen people all over the place on the number of cycles, the reductions or elimination of Oxyliplatin, etc. The experimentation is feeding big data and the data is changing or getting more accurate with more and more people and the records of what they are getting.

The course of chemo is very hard and you do feel like getting it over with as soon as possible and also having to deal with permanent side-effects. We don't necessarily know if there are side effects down the road on the newer drugs. A co-worker had breast cancer decades ago and has developed MS recently - it's a known side-effect of the chemo drug that she took but it took a long time to affect her. So sometimes is a trade-off in intensity. I have seen people in Stage 4 that turned out better than Stage 3 - I think that there are a ton of variables out there on staging, chemo, and ultimate results.

I haven't seen your posts in a while (though I don't spend as much time here as I used to due to work). How are you both doing?