Re: On the whole, I've had better weeks

Hi Lisa,

That's terrible! What a horrible, ignorant thing to say to someone. No wonder you were speechless, I would be too and livid as well I think. Some people are so insensitive and stupid as well!

Hope that the rest of your IMRT goes smoothly and hope that the scans show good results as well. My fingers are crossed for you!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: On the whole, I've had better weeks

Quick update on me.

5 more days of IMRT to go. Yesterday was my last chemo day with cisplatin. I had to get a 2d dose of iron because I'm anemic (got a bag of iron the week before, too) and this is my last week of wearing the 5FU pump all week. It will come off Friday, as will the picc line they put in my other arm for the IV antibiotics I've been taking since I spent most of February in the hospital with infections and dehydration.  I think they will keep me on an oral one while they are deciding if they can remove my bile drain tubes, because I've had lots of problems with them.

My oncologist said that since I only have 2 days of radiation next week, I don't need the chemo then. They are sorta like snow days, tacked on at the end. I would have finished radiation this Friday, but I ran a fever one day and was told not to come and the other day, the machine was down, so I'm making them up next week for the full 30 days.

I will go Monday and get a 3d iron infusion.  They said anemia happens with cisplatin particularly. No wonder I feel draggy and tired.

Still not great appetite. Wondering if that ever returns. I hover between 117-119.  I think everyone would like to see a number closer to 130.

And then .... I wait.

I'll see my oncologist the next week (I'm assuming he'll do labs then), and we'll schedule my scans. I know they want at least 4 weeks to let the radiation finish and to let the inflammation die down to get as good a picture as they can. My pre-radiation scans were really hard to read.

And then ... I don't know what comes next. The scans will be key.

I am trying to get some normal life back. I rode my bike about 6 miles Saturday and it was cold and windy. I'm signing up for a 23 mile charity ride this weekend. Last year I did the 30 and 50 mile routes of these respective rides without even thinking about it, to give you an idea of how my "then" versus "now" is.

Still, my oncologist was pretty amazed I did the 6 mile ride at this point in treatment. He said I looked fantastic (and I don't mean looks - heck, he's probably never seen me with a lick of makeup on).

So, I have no idea what the future holds, but I'm trying to hold on to some normal life (whatever that is anymore). I still feel that 2d shoe hanging over my head, ready to drop at any minute.

What is the balance when you are done with active treatment, but still aren't a candidate for resection (and trust me, if they say no here, I will be getting 2d, 3d, 4th opinions).

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Dear Lisa, you are an extremely strong woman in mind and body! It does take a little time for the energy to return after treatment so give Lisa a chance! Gee, 6 miles on a bike....I'd be lucky to go a block! You rock and keep on rockin!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

If I knew how to post a picture here, I have one of me on my bike for the first time since diagnosis.

Impatient patient.

Re: On the whole, I've had better weeks

Lisa,

I am so impressed.  You have more strength and stamina than most people who aren't being treated or fighting this disease.  Would love to see a picture if you can figure it out.  I finally did but have no idea how I did it.  If I can do it I think almost anyone can figure it out eventually.   Good luck to you.  Hoping everything looks good after  your scans.  You go girl!  smile

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: On the whole, I've had better weeks

I did a search for how to post a picture here and came up short. When I update caringbridge tonight I'll add one there. Of course, it's also on Facebook. Happy to have friends from here on my Facebook page. I am Lisa S t e g a l l (no spaces) on Facebook.

Impatient patient.

Re: On the whole, I've had better weeks

Congrats Lisa, on being neary finished with this treatment! I understand the joy and freedom of biking. Love those charity bike rides.. We have some lovely ones here in the CA Napa Valley wine country if you're ever out this way! Anyhow, what you've been through treatment-wise is like a marathon in itself so be gentle as you ease back into your athletic endeavors. Living in the moment helps ease the unknown of "what's next" as far as treatments go. That's how my sister gets through things.
Take care,
Willow

Willow

Re: On the whole, I've had better weeks

LISAS, I am going to attempt to tell you how to post your picture, I am really computer illiterate.

Click on your Profile
Click on Avatar
Upload Photo   You may have to crop it.
Right click on Image (picture) click on 'open with paint'
Resize the Pixel at that time  Pixel cannot be larger than 60 X 60 and make sure you have designated PIXEL.
Go up to file in left corner and SAVE, 

Hope that does it. The Pixel thingy appears on the paint page.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

Lisa....you are incredible.  Guess riding the switchbacks of Emerald Bay has you conditioned to the point of no return. Not chemo and radiation plus all additional problems you had to conquer can't keep this lady off her bike.  Kudos to you.
In re: to what comes next in treatments I would like to compare this cancer to that of a chronic disease - a long-lasting condition that can be controlled with varying interventions.  Some are able to be cured.
Fingers are crossed that you will receive a great report.  In the meantime you will continue to grow stronger with less fatigue and hopefully the bile drains can be removed. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: On the whole, I've had better weeks

Well, this morning was my 30th radiation treatment. I got hugs from my radiation tech, the nurse, the nurse practitioner, and the radiation oncologist when I was done. I finished my planned chemo last week, getting the 5FU pump off on Friday. I also finished the iv antibiotics, so they took my picc line out Friday. I'm on an oral antibiotic to keep from getting another bile drain tube infection for the next month.

So, now I wait. That's the part I have the hardest time with. I'll meet with my oncologist next Wednesday. I assume he'll do lab work and then he'll schedule my scans, looking at about a month or so from today to do them.

Anyway, I seem to be hanging in there okay. My goal for now is to gain back a little weight. I was down to 114 this morning. I can't believe The words "I need to gain a few pounds" would ever come out of my mouth, but it's true. I am hoping I will have more appetite and foods will go back to tasting normal. That's been my biggest issue.

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

LisaS, YIPPEE, you are on your "GOOD" way! I am sure there is some anxiety about 'finishing' all you had to go through in as much as you hated doing it, you knew it was working and now you are done. Hope what I am trying to say makes sense. One of those occasions where I know what I am trying to say but will you? LOL  Try to take one day at a time, I know easier said then done.
Enjoy your new freedom and eat, eat, eat!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

I second that... Enjoy the freedom from treatment. Enjoy the beautiful spring, friends, family and some fabulous meals as your body and mind recover from the chemo and radiation.
Willow

Willow

Re: On the whole, I've had better weeks

Lisa....Congratulations on meeting some major milestones.  It was not easy, but you prevailed with your consistency, determination and a great medical team. 
Although things may not taste well, you must try to force yourself to eat and increase your calorie intake.  Some people find benefit with Cannabis or the synthetic version "Megace."  Although, a high protein intake is of most importance, we found that calories of any kind aided in the weight gain.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: On the whole, I've had better weeks

Lisa,  You are now on your way.  Wishing you luck on this part of your journey.  At least you can eat anything and everything you want for now.  smile Wishing the best for you on all of the results.  Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: On the whole, I've had better weeks

I was down to 140 pounds for about two weeks.  Since I'm 5'10" I was gaunt.  While I was in a chemo session I mentioned to my nurse that I needed to stop losing and start gaining weight.  The person in the next chair "whispered" "Chocolate cake.  500 calories a slice."  If that doesn't row your boat, pick something that does.  Sam's Club has a great blueberry muffin that also goes 500 calories each.  Just remember, once you get within 10 pounds of where you want to reach, you need to taper off.  And make sure you combine this with some sort of light exercise so that what comes back has some tone to it.  Eating anything you want is about the only perq of this cancer - make the most of it.

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: On the whole, I've had better weeks

Duke, my husband's been trying to fatten me up with dove bars. Ironically, I'm not a big chocolate cake or other sweets eater (or ice cream). If I could add 10 lbs, I'd be satisfied and I could quit cinching up my belt on all my pants so tight!  I realize that's a minor problem. Yes, I agree with you re the exercise. I've continued to walk my dog throughout (although in truth, not on days I deemed 'too cold' - left those for husband to handle). The beauty of living with a border collie is that you WILL walk or you WILL regret it.

I've gotten back on my bike. Before I was diagnosed, I was downright athletic looking - cyclist legs. I want them back. I've signed up to ride around Lake Tahoe in September, so I need to get back to longer rides and weekly spin class. I think finishing all this treatment, I'll have more energy to do that. Now, if they will only say my bile drain tubes can come out when I do my scans. That's what I'm hoping for and I have to say, my oncologist has been too.

Impatient patient.

Re: On the whole, I've had better weeks

I know as soon as I write this I will be putting myself up for more scrutiny, which has happened before.

I cringe when anyone talks about adding calories by absorbing mostly sugar. If there is one thing I have learned is the processed sugars we eat as a routine do nothing to help and can cause our systems to work harder to eliminate them.

Note: I am not directly referring sugar helps cancer grow. Just that sugar adds no value and causes our body to put more effort into getting rid of it.

For anyone who believes in the "nutrition" theory, I hope you understand that what I am truly saying is "Please" find a way to get those calories without needing a piece of cake. Try nuts, grains, fruits, smoothies, juicers, almond milk, etc., etc. etc.

A piece of cake, now and then, is a "treat". But as a standard diet, it has been shown to cause your body - and in most CCF cases, your liver - to work harder to get rid of the sugars.

I know this post will cause others to be upset with me. Sorry in advance, if I upset you.

Carl

68 (edited by LisaS Wed, 16 Apr 2014 14:48:27)

Re: On the whole, I've had better weeks

No, no worries. I was, pre-diagnosis, one of those people who avoided sugar as much as possible.  I shopped the outer edges of the grocery, I didn't buy things that came in a box (and if I did, I read labels very carefully). I really did (and do) believe in Michael Pollan's 'food rules'. 

I do eat nuts, etc. a friend (a really good friend) gave me a vitamix blender for great smoothies.  I've switched to a full fat vanilla yogurt instead of the much lower fat Greek I did eat. Yes, it probably has more sugar, but not crazy amounts. 

Yesterday, when I finished radiation, I splurged and got a donut. I honestly don't remember the last time I had one. Years. I couldn't eat it (a plain one), it was so sickeningly sweet.  How do people eat them with all the extra goop on them? 

I have talked to a dietitian throughout.  My radiation oncologist didn't care what I ate, just that I was getting calories, but I did. I will say I've eaten more red meat (which I hardly ever ate) because the smell of fish (which we did eat a lot of) really got to me and sometimes I had trouble handling the taste of roasted chicken. I guess my splurge was giving myself permission to eat burgers more often. I could usually get down half a plain burger from one or two places near us or part of a margarita pizza.

Thanks for weighing in, Carl.

PS, i went back and read some of your earlier posts. Your wife and I are the same age. She was diagnosed 6 months before me. I had many of the same conversations with my oncologist re gem/cis versus the folfurinox (and he said much the same thing about toxicity and promise in pancreatic cancers). We also opted to start with gem/cis and did well enough with it to move to radiation.

L

Impatient patient.

Re: On the whole, I've had better weeks

Congrats on finishing your treatments Lisa, great stuff! I hope that the weather is good over your way and that you can get outside and enjoy the cycling asap!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: On the whole, I've had better weeks

Thanks Gavin! 

We've had a chilly snap this week (I realize my friends who live further north will be laughing at what I call chilly), but before long it will be hot. Pleasant spring temps don't last long here, but I plan to take advantage.

Impatient patient.

Re: On the whole, I've had better weeks

Congrats Lisa! Way to go. We were so happy to be done yesterday although I think I was happier than Mark. He's just so tired. But he did ring the bell when he was done.

Now get back to biking and hopefully things will be smooth sailing now.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

I posted this on Facebook, but I'm disappointed I didn't get to ring a bell!  I'll take getting hugs from everyone from the radiation tech to Dr. Cheek.

Impatient patient.

Re: On the whole, I've had better weeks

I am sorry Lisa that you didn't get to ring the bell, if I had known at the time I would have rung for you. I would take the hugs too....we got hugs from all the staff...not Dr Yao though, she's not super hugable.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

Awwww, that's too bad she's not.  My radiation oncologist was super huggable. And incredibly nice. And funny. I didn't see him a lot, but I really liked him.

Impatient patient.

Re: On the whole, I've had better weeks

One thing I heard from my onc today is that I could be prone to blood clots, so I should not sit for more than two hours at a time (couch, car, airplane).  Has anyone else been told that?

Fighting with dignity, not desperation.

Live, Laugh, Love