Worried about tomorrow?

[Chelee]

This may sound dumb but I have been through five months of chemo. I got through them so much better then I first thought I would. My worse one was the first...and NOT because of side affects or anything...but just the over-all fear of the unknown? I had no idea what would happen the first time...so it was scary. But all that worry was for nothing because I breezed through it that day. Not one problem.


But now...tomorrow (Monday) is my LAST full cycle of chemo. (Then I have to weekly herceptin the next two weeks following.) You would think I would be an old pro by this time....and not a worry at all...right?! It seems to be the opposite...I am really stressing over this last one. I don't really know why? I kind of feel like since it is the last...something will go wrong. (I know I shouldn't think that way.) All I have done for two days is cry. I just don't know what brought this on?


My *first* oncologist didn't give me neulasta once and landed me in the hospital...so I have had some lung damage...so I think maybe that is some of my fear? My lungs have never felt right since then and even the PET/CT scan shows permanet damage. I still use oxygen at bed time since that happened. Plus I can't walk far or too fast without running out of breath. So since that happened...I have it in my mind that it can happen again, or worse. Especially since chemo builds up with each one you have.


And the other thing that worries me to death is with all the chemo I have had...I see a big round node under my collar bone which did show up on the PET/CT scan. I have asked my oncologist about it and she just says not to worry about it. (Oh..sure thing!) Thats impossible. Why aren't they concerned about that node when I have been on all this chemo? Does that mean its not working. I am sorry for being in a bad place today...but I just can't shake it. So many things are going through my head. The PET/CT scan says "There is a borderline enlarged lymph node measuring 1.5 cm, this is unchanged from prior examination".) Even if it says its unchanged...why aren't they concerned about it? I can't help but worry. I don't want my cancer to spread because they are ignoring that? I am on my second oncologist in THIS group I can choose from...I like her so much better then the first one...but I notice they NEVER really answer my questions straight out. They are always so vague with me. They talk and say nothing. (It just makes me worry more!)

Maybe I am just afraid and worried about tomorrow because its suppose to be my *last* chemo until I get Rads. So maybe its just feeling like a safey net is gone? I just don't know...but I am sure tired of the tears the last two days. Its so unlike me.

I just thought if I expressed my fears to people that have been there...and still are going through all this...you guys wouldn't think I totally lost it. (Or maybe I have?) I hoped it would help me to feel better before tomorrows infusion. I always go in infusion in a positive mood...but this time I can't shake this feeling I have. Its just bringing me down. My husband just doesn't understand when I tell him things like this. He just looks at me and says "I am sorry honey", then goes back to watching TV. Or worse yet...he looks at me...hears me...but says nothing. (I might as well talk to the wall at times.) I don't have anyone else to talk to about this. No one wants to hear it. I feel so alone at times.


Is it normal to feel worried when you are at your last chemo and moving on to Rads? I have waited so long to get to my last chemo...now I have to feel like this! I SHOULD be so excited...what the heck is wrong with me? I really am so stressed about tomorrow. It just makes no sense to me. To anyone that made it this far...thanks for reading this.


Chelee

[lisahammo]

Hi Cheelee

I think you are right in thinking that the chemo is your "safety net". While you are having treatment, you feel that you are actively fighting this bastard, but while waiting for rads, you will feel that nothing is really being done. That's not true though. Your body needs a chance to rest and heal before the next onslaught. Resting is part of the treatment, and is definitely needed after everything it has been through.

Try to look at it this way. Rest as much as you can, take your vitamins, etc and just heal.

Take care.

Love Lisa

[LovingDaughter]

Chelee:

I have read that ending treatment can be even more emotionally draining than going through treatment. When you are taking treatment, you are actively doing something about the problem, but when you stop, sometimes you feel helpless. This is normal.

Hang in there and stay strong. You have taken this disease head on. Try to be confident about some of the strides that you have made with your treatment.

Consider doing things that are therapeutic for you--go shopping, get a massage, get a reiki treatment (they really help my mom), etc. Take time out for yourself--it may make you feel better. I always encourage my mom to take baths with lavendar bubble bath. Lavendar is very soothing and can help you to calm down. Consider even getting a lavendar pillow mist. It always puts me right to sleep!

I am sure that it can be frustrating talking to your husband. Sometimes it's difficult to know the right thing to say. I am sure that he is also going through a lot right now--scared, worried, sad etc., but he may just not know the way to express his emotions. Try to cut him some slack, and consider seeking out someone else as a confidant who isn't as close to the situation. My mom finds that her best confidants are other women who have fought the disease and won because they know exactly how she feels. They say things to her that I can't even say.

Don't give up, stay strong, and you WILL beat this thing. We'll all be right here cheering you on.

Take care and may God bless you and keep you safe,

Jayne

[LovingDaughter]

By the way, Chelee, are there other oncologists in the are you could go to? It's really important to have a great relationship with your oncologist. My mom just loves here onc. He always knows the right thing to say at the right time. He also always, no matter what, offers words of encouragement. He's a doctor and a friend. I think that combination is very important.

[Bev]

Hi there,

I have a friend who said ending chemo was very hard for her. She was a triple neg, no herceptin. She said she felt like everyone felt she was cured and should just get on with life. She said going to the hospital support groups helped. I have dark anxious days. I'm beginning to wonder if the chemo has addled my brain to do this. We've been through alot. Radiation will be easy. Best of luck.

[Her2nSue]

Chelee,

You're not alone with these feelings concerning your last day of chemo. I had my last day back in April before doing only herceptin every three weeks. On that day I was ok during infusion and everything. Then later in the evening, I just lost it. Almost like post partum depression. I felt so let down, empty and sad. I thought I should be feeling happy about it being my last treatment, but it was just the opposite. As everyone else has said that when we are taking chemo we know we are taking an active part in fighting this disease, and when we're done with treatment we feel lost without that safety net. I know that when my herceptin treatments are through, I'm really going to feel a complete loss of that safety net. I just keep praying for strength to get through it. and I will do the same for you. I'm also a big fan of pampering yourself when you feel low, as suggested before a nice lavendar bath to soak in is a great stress reliever. sending you a hug

Sue

[Chelee]

I wanted to thank all of you the replied as I am really feeling down tonight. This is the worse I have been since I was first DX with Her2. Usually it passes after a good cry...but not tonight. Then of course I had to take the Decadron tonight and I hate that because I need to be up so EARLY and with the Decadron as you all know its almost impossible to sleep.

But I sure appreciate all the words of encouragment...and your support. I really needed it more tonight there ever before.

Jayne, I think your right about when I person is ending treatment...its like your not doing anything to fight off the cancer. I liked all your suggestions about going shopping and such...but after my first oncologist decided NOT to give me Neulasta...I had lung damage. I have been on oxygen since Feb. 23rd. I even carry a portable with me to my appointments. I am getting a little better and don't have to use it as much...but since the lung damage it has made me MORE house bound. (That alone has probably added to a big degree to the way I am feeling.) I just go to bed, get up and go to appointments...or sit and do things here at home. I never get to go any where anymore thanks to my first oncologist.

Also Jayne, I have to agree with you that having a good relationship with ones oncologist is so important. My first one I really did like...then after being with him about a month...all kinds of problems came up. He never listened to me. Never gave me Neulasta or Procrit. Heck..I knew nothing about those drugs either at the time...he just let me feel bad all the time and landed me in hospital. So I switched doctors...and the new one was so much better. But I have had her about 4 months now and she just doesn't ever fully answer my questions. Plus I see a pattern of her trying to avoid any and all questions. I didn't notice it at first. She is so vague when I ask her anything. The ONLY way I find anything out about my actually prognosis is from THIS BOARD. I am not kidding. I have to spend hours online researching my own prognosis since they WON'T tell me anything. It doesn't seem right that they can get away with that.

Makes me wonder what she knows and doesn't want to tell me? I see SO MANY posts like the one you wrote where your Mom has a great oncologist and he always says the right things. Plus he is encouraging. The two I have had in the GROUP I am stuck in...they WON'T tell me anything even remotely encouraging about my bc and prognosis. I have told them both I am the type of person that WANTS to know exactly what I am dealing with...and NOT to hold back anything. But they still have told me nothing. Its like pulling teeth to find anything out and I take my husband with me every appointment. He isn't shy and he speaks right up...he can't get any thing out of them either!! Its frustrating. I don't like it that I can't really fully trust them. Lets say they AREN'T hiding anything from me....don't they realize by saying nothing they make things worse.

Anyway...I don't want to bother anyone...this is my problem. I have already wrote TOO LONG of a post again. I am just still so nervous about tomorrow. I will just try to think positive and probably tomorrow when I get home I will wonder WHY I was so stressed and laugh at myself for worrying myself silly over nothing. This is a long journey for all of us...some times its easy...and others times not so. But this too I will push my way through. I have been through to much already to give up now.

Lisa, Sue, Bev & Jayne, I think its like you all said. I feel like my safety net is gone. Its pretty scary. Especially when I CAN'T get a straight answer out of anyone down there and I dont know why? I do have a second opinion coming up June 27th at a WELL KNOWN cancer center. I can't wait to see what they think about my over all treatment..and see if they can tell me anything.

Thanks Sue for sharing how you felt the day of your last treatment. I guess this is normal in many cases. This is just alot for anyone to go through...its bound to catch up with us at one time or another. Its just that I had been doing pretty good until the last two days. But I will take a deep breath and put one foot in front of the other and get on with it. I got through everything else...why I feel like I won't tomorrow I guess is ridiculous. Thanks again to all of you for your support. You are all so great! I really appreciate it.

Chelee

[kristen]

Hi Chelee,

I have been reading your posts and you have not had the best of experiences and I am so sorry for that. It's tough enough to got through this and then not to get answers only makes it harder. Does the cancer center you go to have a PA or a study nurse that maybe able to anwer your questions? My insurance compamy assisngned me a case worker, she helped me out alot.

I was freaking out at the end of my chemo before I started rads and I didn't know why, and I asked my best friend and she told me and it put it all into perspective and from then on I could cope, live with it anyway. She told me, that while I was on chemo I felt that it wouldn't come back, just as the ladies mentioned above. The anxiety that your feeling might be is a control issue. You have no control over this disease once treatment is over, unless your on tamoxifen? Doesn't sound like you are.... I had one year of Herceptin coming up and that still didn't make me feel any better, the results were not in yet. I feel so much better with the results in and what my % are at this point in my journey. Once I accepted that I don't have control and to just listen to my body and live my days to the fullest and to live, then things became easier for me. I don't know if this will help you, but it helped me so I thougth I would put it out there for you. Good luck tomorrow, I will keep up in my prayers. Stay Stong, remember you have had the benefit of Herceptin tx as an adjuvent.

[G. Ann]

Hi Chelee,

It's great news you are finishing up your chemo BUT the unknown is scary. I agree with others that you do feel protected, monitored, and sense of being proactive during treatment. In some ways that doesn't make sense as chemo time is also frightening. I am two years out from chemo and just about halfway through Herceptin. I've experienced my share of anxiety and fear as most of us have and still have "bad" days (mostly nights).

What helped me was attending the local breast cancer support group and talking to others who were in treatment or had completed treatment. If you have a support group near you, try to attend, or at least talk to the person facilitating it. For those on Herceptin though, the preventative treatment continues, so you will have frequent contact with oncology nurses (usually a good source of information and/or encouragement). I hope your second opinion appointment at the end of June gives you answers and comfort.

I hope I'm not breaking any rules by mentioned specific books. Since outside websites and articles are often included, I thought it would be OK. The books I read were: "After Breast Cancer, A Common-Sense Guide to Life After Treatment" written by Hester Hill Schnipper, LICSW (also a BC survivor); "After Breast Cancer, Answers to the Questions You're Afraid to Ask," Musa Mayer; "The Breast Cancer Book of Strength & Courage," (collection of inspiring stories to see you through your journey) by Ernie Bodai, M.D., F.A.C.S. & Judie Fertig Panneton; "Straight From the Heart; Letters of Hope and Inspiration from Survivors of Breast Cancer" by Ina Yalof.

Two quotes before I close which I found helpful. The first from Corrie Ten Boom (survivor of WWII concentration camp), "Worry does not empty tomorrow of sorrow; it empties today of its strength." The second quote from Ralph Waldo Emerson, "Knowledge is the antidote to fear."

Your next phase is the Herceptin treatment. Our oncology social worker at my group support meetings tells us we are now facing a "new normal" for anyone diagnosed with cancer. I truly believe you have within you the strength and courage you need to face the next phase.

G.Ann

[bobbiw]

Hi Chelee
I finished Taxol May 25th and am continuing on with weekly Herceptin. During my last week's infusion I couldnt help it but I sat and cried quietly.....could not figure out what the deal was. The onc nurses were great, talked with me etc. After reading these posts I am now convinced that it may be due to the end of Taxol. Even tho I am continuing on with Herceptin for me the AC and then Taxol seemed like the fighters you know?
Hang in there and advocate for yourself.
Bobbi