Mikenh and Surgery
Comments
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I don't recall whether you'reabita 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.
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Oh, I see. You are on a 3
Oh, I see. You are on a 3 week cycle. I wonder of it ends up being the same amount of chemo drugs. Yes, I am on folfox with a 2 week cycle. Tomorrow is my 4th. After 10 days I get a scan to see if my liver lesions have shrunk enough to remove. Then I will resume 5 thru 12.
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I went back through my sleep
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.
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Delivery headaches this week
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.
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The mail-order pharmacy didnMikenh said:Delivery headaches this week
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.
The mail-order pharmacy didn't get back to me withing the promised timeframe so I called them. It appears that they have a new computer system and I could get the order placed with the first person that I spoke with and she asked me to call back. It sounds like a very noisy call center as there's a ton of background conversations going on on their end and their call people can't hear well. I had to repeat my address five times. So I'm talking to a second person now. I am using a headset and it's quiet where I am. I don't understand why call centers use an environment where their people have a lot of ambient noise. Seems counter-productive and error-prone. I do hope that they can get them to me on time given shipping delays in this part of the country.
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Someone called me a "survivor
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?
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Yes.....I survived colon
Yes.....I survived colon cancer as of this date. A survivor for 21 months. The article is very interesting.
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Interesting Article
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
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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
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Even when I get past surgeryTrubrit 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.
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I don't think that anyone isTrubrit 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
I don't think that anyone is really cancer free because we have mutations that may be cancerous but they get cleared by the immune system or other cell regulatory mechanisms in our body. The problem is when the immune system is weak or otherwise busy or there's a problem with the regulatory mechanisms and cells grow to the point where the body can't deal with them. But I could get used to the term over time.
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WSJ:
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.
This could create problems for those on Oxaliplatin Infusions.
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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
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Thanks for the data point,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.
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McKesson shipped the stuff to
McKesson shipped the stuff to my house when I requested it to be sent to my office. So it's been sitting at my front door since Thursday with temperatures down to -13 degrees. I called McKesson and they verified that it was shipped to my home address when it should have been shipped to my office. So they're going to send out another shipment. I've been trying to get this order since around December 20 and missed an insurance month because of repeated issues. Companies aren't executing well at this time of year and it seems that I have to make repeated calls to make sure that things happen.
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Pricing Issues 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
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I believe that my old stuffairborne72 said:Pricing Issues 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
I believe that my old stuff was $140 for 20. The new stuff is probably around $200 And these are retail proes. You can bill Medicare but that’s not necessarily what they pay vendors.
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