abita said:

Oh, and I am on 12 rounds as

Oh, and I am on 12 rounds as mine spread to liver 

I don't recall whether you're on Folfox or CapeOx but the standard for Folfox is 12 rounds of 2 weeks, and, for CapeOx, 8 rounds of 3 weeks. So it's net the same amount of time. Unless you're on 12 rounds of CapeOx but I haven't run into anyone doing this yet. I think that most people doing long-term chemo usually use the pump.

I went back through my sleep records and found the reason for my tiredness this weekend - I had one night last week with only 3.5 hours of sleep (late family movie night).

I got in 3+ miles on the treadmill (6 overall for the day) and started doing some barbell and kettlebell exercises. I haven't picked up a barbell since before surgery (I did a few Smith Machine exercises but those aren't pure barbell exercises). I was able to get my heartrate up from lifting relatively light weights. The barbell itself weighs 25 pounds and I wasn't supposed to pick up or carry something that heavy. The notable exercises were doing three-point rows with a kettlebell (fitness center got kettlebells recently and it was nice to try them out), and doing deadlifts. What I noticed with the deadlifts was the stress on the back muscles. I usually do three-point rows with a dumbbell but a kettlebell is a lot easier to work with.

I've been doing strength-training with the machines so many other exercises weren't stressful at all but I hadn't really done anything like a deadlift on those machines (I don't think that there's an equivalent) so I felt it in my back. But it was a good stress feeling. I'm only doing a quarter of the weight that I did before so I'm starting out with baby steps. I'd love to spend more time walking and lifting but I have a few more chores to do this evening.

Delivery headaches this week for Xeloda and my Ostomy supplies. I've been making calls this week. It appears that the mail-order pharmacy had my order on December 22 but didn't do anything with it so the nurse called them today and they're supposed to get back to me withing 2-3 hours to arrange delivery. I also called McKesson and the ostomy supplies are set to arrive today. I wanted the supplies mid-December but there can be a lot of problems around the holidays with order processing and shipping.

I'm actually away for a week - this is my first trip with an Ostomy and I brought the Coloplast Travel Bag and will change it over the weekend so that's different. I'm not taking time off as I'm working remotely but a change of scenery is nice. It's in the 20s here which is a lot warmer than back home. Wind is brutal with gusts at 30 MPH.

Someone called me a "survivor" yesterday and I looked around for a definition and it seems to be loose. But I don't really feel like one - maybe after Adjuvant.

I did find this piece on the web though: https://www.canceradvocacy.org/wp-content/uploads/2013/01/Seasons-of-Survival.pdf

Seasons of Survival: Reflections of a Physician with Cancer from the New England Journal of Medicine, July 1985 and it's on my reading list.

Do you consider yourself a survivor?

I read his article and found it interesting, especially since he wrote it in 1985.  Much has changed since then but in some aspects, nothing has changed in the past 33 years.  Earlier detection, more accurate diagnosis and better defined treatment have improved but the point of his article focuses on the stage of cancer experience known as survivorship.  He divides it into acute survivorship, extended survival and permanent survival and then refines his definition of each stage.

One of his recommendations is for cancer survivors to become better communicators, to create an information network.  Ironically, this forum is just that.  Public access to the internet did not exist in 1985 so he could not envision the advantages afforded by it.

By his definition, everyone on this forum is a survivor and with that I totally agree!  It's just that our survivorship durations and experiences differ. 

He concludes his article by mentioning the need to improve not only the quantity of survivors but also the quality of survivorship.  It's interesting to see that those parallel issues remain in 2018.  In fact, quality of life was the primary factor for my recent decision to alter my treatment protocol. 

Someday there will be a cure for and a prevention of cancer.  In the meantime we must persevere to be survivors!

Jim

Trubrit said:

Surviving

I think it is an individual thing. I know folks who say they are Cacner free, and that is great. I cannot even verbalize those words, and that is OK. I know folks who say they are survivors, and that is great; I have got as far as saying I am surviving, and that is OK as well.

Some people need to feel they are Cancer free, in order to move on. 

At the end of the day, it is one big head game we play with ourselves, and we need to do or say what works for us. 

I am doing well, very well, and that works for me. 

Tru

Even when I get past surgery and chemo, and am "cancer free", my world will be forever changed. Before Oct, I never thought in a million years I would get cancer. Now, I know I can, and might again. What word describes that?

I am currently in that stage where my brain is fixated on "how, Why" did I get this.

No complaints. I’m not a complainer.

Still here after two years of fun.

Peace & Love to all of you

WSJ:

Hospitals Wrestle With Shortage of IV Bags, Linked to Hurricane

Health officials worry about responding to flu cases after Baxter International’s plants were damaged

Massachusetts General Hospital in Boston has nurses spending as long as 35 minutes delivering medications using IV syringes, known as an IV push. Instead of a four-to-five day supply of bags, the hospital now has one or two days’ worth. The hospital is so concerned it is looking at using glass bottles for patients instead of the IV bags.

“If the influenza virus or catastrophic event breaks out, that would stress us more. In some ways, it’s unprecedented,” said O’Neil Britton, Mass General’s chief medical officer. “It raises fear we may have to make choices about not doing some things and delaying elective procedures.”

Officials at Catholic Health Initiatives, which offers care in 100 hospitals across 17 states, said it is possible they would have to delay elective procedures until the shortage abates.

https://www.wsj.com/articles/hospitals-wrestle-with-shortage-of-iv-bags-linked-to-hurricane-1515349271 (paywall)

This could create problems for those on Oxaliplatin Infusions.

airborne72 said:

Verified

 I know someone in the Louisville, KY area who is undergoing treatment and she said her infusions have been delayed due to the shortage of bags.

Jim

Thanks for the data point, Jim. That's pretty scary stuff, and particularly frustrating if you're a doctor. It's something that I'll have to keep an eye on (and I guess anyone getting infusions is in the sae boat). It was a moderate amount of work getting my Ostomy supplies (they're three weeks overdue) due to the folks at McKesson not following through on verifications, along with shipping delays caused by the weather; and I spent a several hours the past week getting the Xeloda squared away (I really hope that the stuff does arrive as promised).

I've been using samples for changes and fortunately have a decent number of them remaining. There should be a shipment waiting at my office but I haven't received a confirmation of that. So I'll check with my doctor's office on the IV bag stuff. I hope that they're not reusing bags. If MGH is having a problem getting them, and they're using workarounds, then it's a big problem locally. I'm sure that this is having an impact on surgeries as well.

I received a small box of resupplies a few weeks ago.  It contained 20 wafers, 20 bags and one bottle of adhesive powder and one bottle of crusting powder.  The invoice in the box indicated that Medicare was billed over $500 for the contents!!  Unbelievable.

I understand that all prices are adjudicated and adjusted, but I find it undefendable for someone to claim that a handful of plastic is worth $500.

Jim