Panic attack yesterday

[unco]

I have a form of cancer called myeloma, for which there is no cure. Lots of chemo is required to stay alive for most of us, and I have really lucked out. I've managed to get through almost 4 years on treatments that caused no vomiting and very little nausea.


Yesterday I was supposed to check into the hospital and have a Neostar triple lumen catheter inserted and start some high doses of a chemo called Cytoxan. I actually made it to the hospital and had my blood drawn and started to walk to the department where the procedure was to be done. I got all the way to the door and then just started crying. I walked all the way back to the cancer clinic, thrust my paperwork at the receptionist and said, "I can't do this. Cancel everything. I don't care if I die!" She asked me if I wanted to talk to someone and I said, "No. I'm done. Cancel everything." Then I fled.


On the way home and for some hours after I got home, I realized that my decision REALLY could/would affect how much longer I lived, and I really had to think about whether the risk of vomiting should prevent me from getting any more treatment. I bounced back & forth between not caring and caring.


Because I was SO embarrassed by my outburst at the hospital, I couldn't answer the phone when my bone marrow transplant nurse coordinator called me. I asked a friend to call her to let her know what happened. I've told all my oncologists that I have emetophobia, so they knew. She said they didn't realize how serious it was, but that she had lined up a therapist to come in to my room after I was admitted.


She suggested I try again in a few weeks. I agree I should try. I really don't want to die sooner than I have to. She said they will meet me when I arrive, give me something to keep me calm and come with me for the procedure and stay with me until I feel ok about things. She said they have powerful antiemetics they can use. At home I have compazine & ativan, but I feel they don't work that well. I'm hoping for Aloxi and whatever else is new that they can give me.


I'm worried about delayed onset chemo induced nausea and vomiting. I'm even obsessing about what if I feel sick on the way home in the car? It's a 2+ hour drive.


As it is, 50% of us make it to 5 years and only 1% to 10 years. I can't hope to be in that 1% if I can't handle chemo. Has anyone had chemo with these new anti-emetics?


Thanks,
Beth

[marieb73]

Hi, Beth.


First of all, prayers for you, definitely!


Secondly, I've never had cancer, but a good friend of mine recently has been dealing with Stage 3 breast cancer. The newer anti-emetics work pretty well for her, but she has to take them right on time and she has to occasinally take a compazine too, usually about the time one of the stronger ones is about to wear off but before she can take another. But, she said that the compazine alone would do her no good and the stonger anti-emetics are definitely helping.


Do you have to go through this alone or do you have family or friends to be by you?


Once again, my prayers and heart go out to you.

[shiva]

I don't have any answers to your questions, but I wanted to say thanks for sharing your situation with us and I am really sorry that you have to go through this. I hope this site can offer you some really great support.

[marby]

Beth -


My prayers are with you. What a tough road for an emet to follow. I have a friend who recently went through chemo for ovarian cancer, and the new anti-emetics work really well. She did not have any n* or v* at all. The onlything she felt was really tiredfor a couple of days after the treatments. Beth - you've had fouryearsof treatments and made itthrough them with flying colors! You CAN do this.Don't be embarrassed about the hospital. You've endured more than most people can even dream of. Let them give you the new stronger anti-emeticsand take them up on having the therapist stay with you. Good luck to you and please keep us posted.

[katiepool129]

Hi Beth

Thats quite a story and my heart goes out to you. That's my worst case senario and you are so brave, an inspiration to us all. Let us all know how it goes in a few weeks. I cannot say anything else as i have not been in your shoes. Stay strong, we'll all be thinking about you.

Katie

[tink]

Hi Beth,

You have been so strong for so long, its no wonder that you may have a breakdown at some point. But you are obviously a very strong person to get through this so far, and I have no doubt that you will be able to pick yourself up agian and continue with your therapy. You are really an inspiration to us all.

Take Care,
--Kim

[unco]

Thanks everyone. The hospital set me up with a psychologist, whom I'll see tomorrow. My new date for admission is Oct. 4th.


Is there a Rx that lessens the severity of this phobia? I think their goal is to prescribe something for me to start taking and hope it kicks in by the following week.

[mitch04133]

All I have to say is that my heart goes out to you....you have me in tears, and I cannot even begin to imagine what you are going through. I myself have never gone through chemo, but I have severe health problems, I am in severe to moderate kidney failure. I know that I have been prescribed compazine when I have felt nausous and it works well for me. I am not on any meds for my phobia, so I am not sure about that either. But I am sure the hospital and the doctors can find something for the nausea. I wish I could be more help....good luck with your appoitment. You are a brave brave person, and having to deal with emet on top of everything else most be horrible. Stay stong and let us know how things go.

[sage]

Hi unco, welcome to this site and I hope you find some good support here. I just want to say that I can totally relate to your outburst at oncology - I did the same thing when I had cancer (10 years ago). I thought I made a complete fool of myself and I never wanted to go back there. But my husband called them and they were really nice and I did go back of course...and everything was fine. I was never sick. I'm also now treating an emetophobe with cancer who also hasn't been sick at all.


I think that what you said about how they didn't realize how serious your phobia was is right on....most people really don't get it - i.e., that emetophobia is really quite acute.


On the top of the Treatments section of this forum there are some helpful sticky posts - one that's called INFO to give your dr. or therapist - you can print it out and take it to your psychologist.


I would think that a tranquilizer would work best to help you with your anxiety before treatments. Ask your doctor about that.


Good luck!

[unco]

Sigh. The cancer clinic's psychologist told me that I most likely will have nausea and vomiting. These are high doses of chemo (why I have to actually be hospitalized while I get them). I asked to just do ONE step at a time. Let me get through the stem cell harvest before they schedule a transplant. He told me to take my xanax as needed and gave me a relaxation/affirmation tape (courtesy of Procrit) to listen to.


A friend who has the same kind of cancer I do is going to go with me. She is also phobic in some ways, but it pertains to closed spaces. She gets what I'm going through. She promised to help me through it and be my voice if I need one.


One of the things that really bothers me also, is that they collect and measure all things, um, excreted or expelled.


Thanks everyone, for your words of support and encouragement.

[sage]

Hi unco,


Just remember that it's your body, and you do have power over it. You decide what you are willing to do or not do, what you want your quality of life to be, evenhow long you want to live. It's not some sort of shameful failure to die younger than most. Life expectancy used to be 30...only with modern medicine have we tried to "play God" and live longer and longer. We all die, some sooner, some later.


I'm not suggesting you don't do the chemo - not at all. It's just that at some point, what really matters in this world is how you have touched other peoples' lives, and your relationships with others - NOT how long you live like life is some sort of endurance race. You just make sure that you are comfortable, free from sickness and pain, and do not succumb to pressure from family or medical people about the procedures you want done to you. Live boldly, die boldly, that's what I say. There's no reason to suffer in pain these days, so why would you want to suffer in fear either. They can make sure you don't vomit - there are dozens of drugs to prevent that...so one you're through the chemo you don't have to worry about it anymore.


I didn't go through what you're going through, but I was told 10 years ago to go home and make a will, etc. cuz I might only live 1-2 years. I got busy making my life matter, and I guess I just got too busy to die or something. Anyway, the cancer never bothered me again. I pray the same for you!

[andee]

Hi Unco and Beth, I just want to say that my prayers are with you and that you are both very strong!! I always said that I would never have chemo because of this fear ( I would rather die, sounds stupid but that is the fear talking).Stay strong and I hope for the best for you both.</font>

[unco]

Hi Andee,


I always said I'd rather die, too. When I went in to be admitted last week, I told them that. I'm not anywhere near dying at the time, but not getting treatment would put me there.


Thanks to everyone's support and what Sage has told me, I'm going to make it next week when I try again. I just know I will.


Thanks,


Beth (aka Unco)


un·co Scot.
adj. So unusual as to be surprising; uncanny.
n.An unusual or amazing person.

[kristin1980]

oh hun ..


my heart goes out to you and my prayers and thoughts as well .. it makes me feel just so ridiculous that i have this irrational fear when you are going through this.. for you it is life or death.. and for us it just feels like death but we know its not really going to kill us , it just seems that way but the next day or two we will wake up and and the n* and v* that had once scared us to death is gone and we are fine again.. but once i heared your story.. i feel so petty.


I know this phobia is veryreal but i applaud you for being so brave and being so strong.. so much stronger than any of us! I look up to you in so many ways .. you cant even understand..


Please know that you have freinds here and that we are always here for your support.. just take it one day at a time..


and remember to read my qoute at the end of my post.. it speaks so much!


GodBless you and be with you in your time of weakness and strengths


big hugs


Kristin

[unco]

Hi Kristin,


Thanks so much. I know that most of us would do what we had to do to stay alive, for the most part. You would be able to get through it too. It's just not easy, and I wanted easy.


I'll have my computer with me at the hospital, so I can blog while I'm there. I promise to leave out anything that would be disturbing.


www.myelomablog.com


Beth

[jandub]

Hi there, my prayers are with you! Just remember also that a typical person going through chemo would probably already had n* and v*, but that we are different. Our brains are different, and I bet you will get loaded up on anti-emetics and be fine, even with this new chemo. They have such advanced medicine out there now, and I have a friend who is a breast cancer survivor and an oncology nurse, and her hubby is a doctor, and they always said that its so rare for chemo patients to actually get sick anymore because they nip it in the bud. I guess research says that cancer patients that aren't sick do so much better, even in the long term, so keep that in mind. My friend had a different type of cancer than you, but she a chemo buffet, and never v*, and she's not even emetophobic. I think that therapist told you that because they wanted to prepare you, just in case, but I bet you will be fine, and that everyone knows you don't want to be sick is a great thing. They will load you up with good drugs-you just work on relaxation and beating this! Janna

[kate1966]

Beth, i just want you to know that my prayers will be with you. I cannot imagine going through what you are going through. God is with you, and all of us here are with you in our thoughts and prayers....you will get through this one day at a time. I feel so guilty complaining of my trivial aches and pains when i hear about stories like this...it really puts things into perspective for me. I hope your treatments go well, and that you wont' suffer too much. It seems so unfair...cancer.....my father had lung cancer, but only received radiation for it....so he was never sick...just really tired....i wishyou the very best, and you will always be in my thoughts....good luck dear.

[suze]

Was it your psychologist who said you're likely to suffer n* and v*? If so, try and remember that a psychologist is perhaps not the best qualified to tell you how you might feel as a result of the chemo and what can be done to stop any bad feelings. I would listen to your oncologist and bone marrow transplantnurse who are better placed to know how these particular drugs might affect you and the extent to which anti-emetics can control things - trust them.


A friend of mine recently finished chemo for breast cancer and she didn't v* or suffer n*. Admittedly she was wiped out for a day, felt poisoned, but not the thing we all fear.


My thoughts are with you. I wish you all the very best with your treatment.

[Galadriel]

Beth,
I just want to say you're in my thoughts and prayers. I cannot imagine what youre going through. Just take it one day at a time and you can always come here with concerns or fears or anything like that.

I would think nowadays they have great anti-emetics to stop any n* and v*.

I second what Sage said about that its your body, and you do have a say in what treatments you want to do. Don't let the docs push you into something you aren't ready for yet.
Hopefully now they know just the extent of your fear (that you REALLY fear v*ing) and so keeping this in mind they can help you not have any v* or much n*. Definately talk about it with them until you are comfortable that they understand how you feel.

[unco]

Thanks so much, everyone! I'm so glad I posted my problem. It helps to hear what everyone has to say.