Nervous beyond
 

After the huge mistake made on me in the OR, my confidence level is at ZERO when it comes to medical care. I am suffering the physical aspects of the disaster as well as the psychological. I am NERVOUS NERVOUS NERVOUS about the first infusion of Navelbine tomorrow. I now know how easy it is to die, even with several doctors standing over your body. I am trying to come to a sense of peace about it but am getting very uptight about tomorrow's infusion. PTSD has returned but I have not, not quite yet.
Tell me it's all good.
THANK YOU
Karen

Re: Nervous beyond
 

Oh, how I wish that my words could take away all your anxiety.....Gentle hugs and prayers coming your way.

Barb A.

Re: Nervous beyond
 

KDR,

That is so devastating to lose faith in those who are caring for you.

Perhaps if you find your voice and inform the staff tomorrow that you had a bad experience and are very concerned about another mishap. Ask that they check and double check everything to make you feel safer. Please!

I pray that everything goes more smoothly, so that it helps to restore your faith in your medical team. And I pray that the "navy beans" kicks any cancer cell's patooties so you can be NED!

Wishing you good fortune & good health!

Re: Nervous beyond
 

Hugs !!
I hope the Navelbine kicks the cancer's butt !!
I know the feeling of loosing trust in one's doctors.
My doctor sent me home from his office with full blown
pnemonia, trouble breathing and no antibiotics last Friday. I called 911 and ended up in the hospital for 4 days. I am still taking the antibiotics. My doctor is going to get a big piece of my mind when I see him.
Tell the staff who will be taking care of you to double check everything before they start your therapy.

Re: Nervous beyond
 

When I felt nervous I asked the chemo folks to show me the labels, the dosages and to double -check ALL. They NEVER had a problem with this. If they do.............complain to the head nurse and your doctor.

Re: Nervous beyond
 

Karen,
I agree with the idea of letting the team know about your harrowing experience and requesting/demanding a little extra TLC.
Praying for peace, and a return to health for you!
Denise

Elaine!
My goodness! So glad you're on the mend, but sheesh! what a scary experience!
Sending love and light to you too!
Denise

Re: Nervous beyond
 

Oh, my chemo nurses are the BEST! BEST BEST BEST! They are the creme de la creme. The incident didn't happen anywhere near them. They are my peace and I love them. Fortunately or unfortunately, I have been at the center so long, they are like my extended family. They KNOW me. This is a separate facility from where my death nearly occurred. (Or maybe it did, still trying to figure that one out because my husband was told that I stopped breathing). That was at the main hospital, which is the scariest place on Earth to me. Got to get over it. I guess if I didn't have so many healing wounds and punctures and internal pain, it might be a little easier. But since I feel like I was cut in half by a train...it's hindering my good space.

It's how my body is going to react! I have been so weakened (if I had to rate, probably at 55% full strength right now), and white coats are not what I want to be around at all. I am still in shock. And to boot, someone coded (that's right, someone lost their heartbeat) in her treatment suite about two months ago. Chemo nurses descended on her like no tomorrow...she turned out o.k. but it affected us all!

So, Ativan it is. I'll see how much I can take, I'll push the limits. To the top. Maximum allowable dosage. This is PTSD, that's what it is. This is not Karen. But just like the World Trade Center, no one could tell me it wasn't real, it wasn't big. Time is what helps. And after 10 years, I just got to the point where I could drive myself to the center and not be afraid of high-rises. All that progress is hanging on the cliff, friends.

Karen

Re: Nervous beyond
 

Sending good wishes karen and agree all chemo nurse's are the best!!!:)

Re: Nervous beyond
 

Wow, you have been through SO MUCH-you WILL find Karen again. Fortunately you can trust your chemo team. Maybe they can slow the infusion since you are still healing.

I have a very hard time trusting my local MO. Three years ago, when it came time to possibly have rads he said he didn't think I would need them, so I asked to be referred to a larger centre where the RO recommended I have them. Two years ago when I was having issues (that's what I call them now) and ALOT of pain he wouldn't order a bonescan. I went to my gp who ordered one. (she had been telling me I was fine when I told her something wasn't right for eight months) When I had the scan a week later I had a 3cm lesion through the sternum to the tissue behind where a shadow was noticed, and THEN people listened. I have major PTSD and trust issues because of those and other incidents with other doctors. It takes alot for me to advocate for myself and many times I will go to an appointment and think "which wall shall I bang my head against today" because I'm still having great debates with my local MO.

Your chemo facility at least is separate from the hospital and your nurses are like your family-a real comfort. You are healing and all WILL be good tomorrow.

Re: Nervous beyond
 

Speechless in Indiana with everything you have been through! I hope you are with someone tomorrow that loves you and that can be your support when it's hard supporting yourself. Let them be strong for you and believe with them that you can get thru it.

Cry, breathe, make inappropriate jokes and lastly take that Ativan when your feet hit the floor in the morning! #yougotthis.

Re: Nervous beyond
 

Your in my prayers. Gods blessings to you.

Re: Nervous beyond
 

Thinking about you today...wishing you strength and great results as you go through this new round of treatment.

Re: Nervous beyond
 

Hello Karen,
I hope everything went well today and you are feeling less anxious.
You've been through a lot and survived, you're brave and have a wonderful attitude so I'm sure you're anxiety will pass.
good luck.
hugs and love
sarah

Re: Nervous beyond
 

From one Caryn to another Karen -

I hope it all went well today, and that Ativan did its job.

all the best
caya

Re: Nervous beyond
 

I share your distrust instinct! Glad to see you will have Ativan on board as needed
Keep the faith. What else can we do?

Re: Nervous beyond
 

Well, I was back with my Friday group. And my chemo nurses and I was fine. They know "how" to talk to me and it went perfectly fine. I will work on the trust issue. Only time will heal that.
AND, happy to report, that despite the commotion, my CEA and 15-3 are in the normal range, and my liver function has returned to pre-T-DM1 levels. GO Karen!
Still in so much discomfort, popping Hydromorphone for pain (turns me into a sleepyhead)...want my summer back and I'm going to get it!
Thanks for sharing so much with me.
Kicking and screaming, even at 55%, go away cancer, I'm getting back on top,
Karen

Re: Nervous beyond
 

You go girl!
Keep that fighting spirit going strong!!

Sending love and prayers...
Denise

Re: Nervous beyond
 

So glad that all went well...prayers for you!

Re: Nervous beyond
 

Im glad that the nurses were able to make you feel more relaxed and confident. With your drive and attitude, you at 55 percent have more power than most people at 100 percent. You just keep on kicking cancer to the curb. Prayers for continued success on the treatment plan... hugs.

Re: Nervous beyond
 

Karen,

Do you believe TDM-1 brought you down to 55%? I have had 14 doses and I feel that is what has happened to me. How high did your T. Bili run before you stopped and where is it now? Thanks for sharing.

Nancy

Re: Nervous beyond
 

Thank you, all for your great words of support. GUESS WHAT? Back in the hospital (where'd you go, July?)! I caught a virus and was running a high fever. I started feeling weird, unable to get warm before my first infusion of Navelbine. Took it anyway and the next night had close to 103 temp. Went to ER and am back, but this time, it's smooth, nice room, great nurses, completely different experience. Fever is gone, but white count has fallen, and they don't think the combination of a possible virus and low whites is a good combination. Plus I'm still hurting on the right side from shoulder to hip. Yes, I am dancing in the rain...

Love
Karen


Nancy, I will PM you, check your box.

Re: Nervous beyond
 

What's that term again? Oh, I know "crap on a crapstick!"
Keep the faith

Re: Nervous beyond
 

Dancing in the rain!
Laughing at the clouds!
And... chuggin' along!

You ROCK my friend!!!!
Prayers, even more and more fervent than usual, headed out on your behalf. I think Sherif and Yasmin might need a few too - Don't worry...I gottcha covered!

Rest, get well, know you are loved!
Denise

Re: Nervous beyond
 

You are back in the hospital? Indeed not a fun July ...

Will be praying for your quick recovery. Hang in there ...

Re: Nervous beyond
 

Nancy,
Forgot to look at T Bili from start to finish of T-DM1 for you.
Normal range: 0-1.0
Start: .5
Finish: .7
HTH
Karen

Re: Nervous beyond
 

I am not up-to-date with what has been going on with you and others....but just signed on...saw your post from the other day...and just want to say, I wish you better days ahead. Thinking of you and sending all the good wishes that I can. I can only imagine how much strength it takes to stay strong thru these long days.
All the very, very best to you!

Re: Nervous beyond
 

Nice to hear you have a nice room and it is all comfy!! I hope the food is good that always helps. I hope you get to feeling better very soon!! You are one tough cookie!!

Bonnie R....Crap on a Crap Stick makes me laugh everytime I read it!! It is now on my list of terms to use! hehehe

Re: Nervous beyond
 

Karen,
I am so sorry you are having such a hard time! You are one of the strongest among us and I know you will rebond with grace and joy.
Hugs,
Sandra

Re: Nervous beyond
 

Linn, wish I could take credit for that saying but like most words of wisdom, I am just passing along something I learned here
Keep the faith(I will claim this one!)

Re: Nervous beyond
 

For goodness sake...Im sorry you are back in the hospital, but Im glad you are having a better experience this time, and definitely glad the fever is gone. Sending lots of prayers your way.