lisas
Forum Replies Created
-
Posts
-
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.
If I knew how to post a picture here, I have one of me on my bike for the first time since diagnosis.
I’m glad your siblings are going to come in. I hope they will be supportive. This shouldn’t fall on just your shoulders.
Lisa
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
Just to be clear, a POA is different than a durable power of attorney for health care, although a regular POA is important too. The hospital probably has the DPOA form. It’s really something we should all have. When I was diagnosed, I took care of that. Should have years before, but hey, no one ever does it until they are in crisis.
I don’t know other hospitals in Houston if MDA isn’t an option ( although, ironically, I was born at hermann hospital).
I can tell you Baylor hospital in Dallas (main branch) sees a fair amount of cc patients. I am being treated there. I feel I’m getting top quality care. My oncologist is dr A. David McCollum.
Well, as a relative newcomer and a patient, I have read so many of your informative and caring posts. You’ve given me a lot of hope that I have more time than I thought on first diagnosis and how to address all my options with my doctors. So, thank you. But having said that about hope, I’m a realist and want to be prepared for whatever, so writing about anything is okay.
I really just ditto what everyone else has said ^ regarding taking care of yourself.
Lisa
Whew. I’m so sorry that you are dealing with this. I don’t know that there is any good way to bring it up, but hopefully, your dad will want to have this conversation. You say that he is leaning on you for decisions. Are you his next of kin? Do you have a durable power of attorney for health care from him appointing you to make decisions? It’s very important to have that if your dad is lucid to sign it. Hopefully that will make decision making easier.
Hospice can also help you keep him comfortable.
Lisa
Iowagirl wrote:.Thank you again…..it means so much to have a sounding board. When I tried to talk with one of my best friends today, she told me to get off the internet. Sigh.
My friends and my husband tell me that all the time! They don’t get it.
I’ll add another welcome. I’m 56 as well and was diagnosed just about a month after you. Glad you have a great support network. It’s really key to getting through tough days. And, this forum has a lot of great support too.
Lisa
What not to say to someone you haven’t seen in awhile:
Oh, I thought you died.
Seriously, I ran into my across-the-street neighbor this week (we normally keep very different hours and don’t see him all that frequently anyway). He did not know I have cancer, but that’s what he told me. And, he apparently told other neighbors I had died.
I was … speechless.
Other than that, I have 7 days of IMRT left (out of 30). My oncologist says next week is my last week of cisplatin/5FU (since I only have 2 days of radiation that following week).
I guess I have to wait about 4 weeks for scans after this to let the inflammation go down. I don’t know what to do with myself without daily/weekly doctors appointments. I don’t think I’ve had a week since October without some medical issue.
What to do after the scans is the big question.
Lisa
Stella,
There’s nothing to forgive. Grief is a process and not an event. Everyone handles it differently. Do what you need to do for yourself. We’re here for support if you need it.
Lisa
Dear Pat,
As a patient myself, these are the posts that are hardest for me to read, but I wanted to tell you I’m so sorry that you are at this crossroad. My thoughts are with you both for peace and comfort.
Lisa
Missing it completely or just rescheduling it on a different than normal day? Twice, my “regular” chemo day had to be moved because either I or my oncologist was out of town. Plus, we had to do some shuffling around of days (moving one session a week) over the holidays. I didn’t feel like I skipped any sessions, though.
I don’t really have an answer for you, but I know from my personal experience that the bile drains and infections go hand in hand. I’ve not had some of the symptoms you describe, but I kept getting infections in the tubes (at least once getting into my whole bloodstream). I spent most of February in the hospital because of that.
Has your mom’s oncologist brought an infectious disease specialist on board as part of the “team.” Mine did and I thought it was really important. I’m taking IV antibiotics, which I can administer to myself via picc line. Since getting on them, I’ve quit running fevers and haven’t had the infection issue.
Just a thought to see if that would help your mom.
Lisa
