I wonder if the port is the best route for treatment? If it is, maybe it’s time to just do it…we found my mil colon cancer so late that a colostomy bag and removal of some length of colon was the only way, and that would be terrible to hasten toward that … just musing, I fully respect it’s your choice!
How about starting the day with a cyber hug? {{{KIM}}}
Susan
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Just wanted to add - I have a power port put in 14 years ago for breast cancer chemo. I have small, rolly veins and with some lymph node removal only one arm would have been usable for chemo. I have had it changed three times, but still have it in. I am on remicade for crohn’s every seven weeks and found the port worth the oddness in my upper chest. I swim, ride, and do everything I used to do. I just wanted to tell you my port experience. Always your decision, but don’t let the feeling of things being out of control color your choice.
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A port is really no big deal. My daughter has one for Lyme, I think it’s her 4th port (previous ones for bowel perforation infection and sepsis). There’s some pain after insertion, you have to be stuck once a week for a new needle or once a month while it’s not in use to keep it from clotting off, but really, it’s much safer overall than a PIC line as long as the person accessing the port uses adequate sterile procedures. Depending on the facility, you may have to watch them like hawks. That includes a mask for both you and the caregiver while re-accessing the port.
My daughter used to pull hers the night before a reaccess so she could take a thorough shower. There’s an anesthetic cream that can be applied to reduce any pain from the needle access.
Usually, they give you awake sedation for the initial placement… Versed, otherwise known as the “I don’t care drug”. They should give you some short-term pain medication for several days after insertion. Hopefully, they haven’t pulled back on that now because of the fear-mongering over narcotics.
Kim,
Did you go to the oncologist?
I was thinking of you yesterday. I went to the plastic surgeon the dermatologist reccomended for my shoulder. In the past, I would’ve ignored it, but you gave me the courage to go.
Thinking good thoughts
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Thinking of you and hope today is a better day. Would you pm me your address? thank you.
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It has metastised to my liver and several lymph nodes and when they found that out, surgery was off the table, Chemo is the only way to give me some more time.
Yes I did, I think those people are saints to put up with us crazies.
She told me what I needed to know, that Folfox was going to give me the best chance at some more quality time,
They must do it with a port because it is too harsh on small veins, and the vesel in the chest is big. PLUS it is a 3 step infusion. first is short, second is 46 hours straight with a small pump they send you home with, only way to do that.
And then there is one more which I forget.
She said she would tweak things and use a lesser product if I really wanted to.
She siad it is the best. then she said something that blew me away, she said 40 to 50. I said huh? she said if 100 people are given this treatment 40 to 50 people have shown signs of improvement. Well gee that is a crap shoot, she said far cry from 20 percent which is what it used to be.
SO it will not cure me at this stage but it hopefully shrink the damn thing in my ass, which is a reall pain in the… Sorry!
The nurse who they assigned me to is incredible. Rachelle. She was so kind and went off and talked to me. I actually cried, and said I swear I just want this to be over. I am okay with that.
But she made me promise to think about it, and call her Friday. She said do it for a few weeks, and see, if you do not feel worse keep going.
And it turns out, I had no idea, but she said somethings that made me realize she had first hand experience with this cancer, her 23 yr old son had the exact same thing. 23! Holy hell. He did the treatment, and got almost another year.
She touched my heart. she was so kind.
So yesterday was a serious;ly dark day. I told the ex, I am so over this, he said whatever you want to do.
Came home slept a lot, Woke up early this morning and thought, " You big chicken, you big weenie"
You can’t even try to do this for a month? Look at all the young people that endure hell for leukemia etc.
I called myself a quitter etc. I was ashamed of myself. Sooooo long story short, I will do it the way the oncologist has planned. So that is that.
Better day today, got some work done at the ex’s and got my back yard mowed yet again. MAn all this rain is good for lawns.
I was screwing with my message box, trying to get rid of old messages and I may have deleted some that I did not mean to. If I have not replied to you, please send another, forgive me. that thing is confusing.
I want to thanks all of you for all the things you have sent. Fudge, I know who she is but do not know what her scream name is. IT is perfection! Ex loves it too.
The lovely prints, are framed on my desk, and not sure who sent them.
And aregard, I got the gift cards in the mail today, and you can bet when I am feeling really ucky I am getting a massage. That is awesome.
vxf sent me lovely bath and beauty stuff, and I have used some already. yum!!
The coffee is almost gone from ZUZU And my mug is the only one I use.
I seriously hope I have not forgotten anyone.
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Kim,
You are not a weenie!! I got all teary eyed with my shoulder, then when they were injecting, I just kept saying “Ow, ow, ow, ow, ow”. I’m like I am being a wuss, but they are hurting me, and rather than jump up and punch them in the face, I’ll lay here and say ow. It worked for me.
I’m glad they were able to talk with you on a personal level, most people in medical/veterinary field won’t discuss any of their personal issues with a patient.
No matter what, there will be good days, and bad. On the bad, you do what you want to!
It is still only up to you, but I am proud of you for going today, and talking more about it. It sounds like they really have your best interest at heart.
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Kim, you are so not a weenie or a chicken or a quitter. You are going through some of the toughest moments of your life. It’s ok to be scared, to not know what to do, to cry, whatever.
Your COTH family is here for you, every single step of the way.
Me? I’d at least consider the port and chemo and give it a try. We’re all different and no way to know how your body will react.
Your oncologist sounds awesome! Remember that 40-50% sounds “bad” but it really depends on which side of the line you end up… you might be on the side that experiences improvement and the only way to know that is to try.
{{Kim}}
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Kim you have been very brave through a very scary time in your life. We are all here to support you no matter what decision you make about future treatment.
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We’re here and we support your choice.
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What a wonderful appointment and what amazing people! I love that Rachelle shared her story with you so you know it’s personal. I’m so glad you felt a connection. I bet it was awesome for her too, to connect with someone like you on a real basis. Another “gift” of serious illness is permission to ditch the small talk and get real with people pretty quickly.
Just as others have said–you are very, very brave! It definitely take a minute for each thing–do I want to do this? Does this make sense for me? i’m glad it gave you a chance to really talk things over with your doc a nd with the nurse so you feel comfortable.
I also hope your ex can get support–a community support group, an online group–whatever. I bet Handsome knows just how to be supportive, but your ex might need some help!!!
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I am breathing a huge sigh of relief for you and very selfishly for myself and my worries for you as well.
I feel very positive vibes coming from you right now and when you need some strength or positive thoughts look to your little blue angel!
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You are NOT a weenie. You are a PERSON who is facing something that most of us will never have to deal with. And 40 - 50 per cent. Holy crap! In the medical field that is great. Please take those odds. Or at least think about them. Glad your nurse is kind and you made a connection with her - that helps you get through.
I am thinking of you and hope tomorrow brings another day to enjoy outside!
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My little blue angel is right in the Kitchen window where I see her all the time! IT makes me smile! (HUGS))))
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so glad you have connected with such a great nurse! (the fudge was from me…let me know if you ever want some more!)
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Oh You are awesome!! IT is so rich, it will take some time to eat all of that! My Ex said one and he is full for hours! LOL
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- Kim ~ this thread alone exemplifies the enormity of your courage and bravery ~
I am in awe of your strength ~
I am ‘Jingling’ & ‘AO-ing’ ~
- hoping today is a better day ~ a bit of peace in having made your treatment decisions ~
((Hugs)) from the entire ‘Z-gang’
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Wishing you so much peace with each and every decision you make. Once again, thanks for sharing this intensely personal journey. Having footsteps to follow down the path, makes it easier and a little less scary for anyone else who needs to walk in these shoes.
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