Struggling

mmoons · 04-14-2009, 06:37 PM

Hi Friends,

I am in such a lonely place. I know you all will understand, having probably been here or are here with me now. Forgive me in advance for this post which I think will end of being just a stream of consciousness.

My surgery was moved up 3 weeks to May 5. My oncologist wants no more than 7 days from my last chemo to surgery based on the aggressiveness of this cancer. I had Taxol today so only 2 more of those to go and 3 weeks left of Lapatinib (both of which I am struggling with and feel absolutely TOXIC). I have over 5 months of treatments under my belt, praise God. I should be happier. This phase is almost over. And I am so blessed to have these wonderful medicines to help me.

Everyone is so kind to me. They are trying to say the right things but comments like "whew...get the surgery over and be done with this nasty cancer stuff" privately make me crazy. I feel like I am just starting. Once the surgery is over then I have the 7 weeks of radiation and 6 months of Herceptin. Then years of watching and waiting and praying that it stays gone.

This is just not me. I am normally so positive and strong. But lately I feel like a crumbling worrying blob. Did I make the right decision about not reconstructing? I am sure I did because 90% I feel good and peaceful about it...almost excited. But sometimes I wake at 2:00 a.m. gripped in fear. Will this come back??? Then I get worried that all my worrying will cause more cancer...and I feel guilty. I do not have a spouse to turn and talk to in those dark lonely late hours...just a 3 year old and a 6 year old that I would OBVIOUSLY never burden. It is my job to keep the fear from them. I have started with a counselor so that will help.

Then I worry about Herceptin for just 6 months. I trust my oncologist completely. She is wonderful and talks to me about everything...from my fears to what she learned in San Antonio to my dx & tx. She is very involved with many of the MD Anderson studies, which is how I got into this clinical trial. I cannot say enough good about her. But she feels strongly that since I have had 6 1/2 months of neoadjuvant treatment, that 6 months of Herceptin is sufficient. I am very interested in what you all think.

My sisters are amazing...just like you guys. I have 5 of them, all in their own hell because they live far from their little sister as I go through this. They love me so much and I am very blessed. I just wish I could get back to a peaceful place in this wretched journey.

Thanks for listening, you guys.

Maureen

flynny · 04-14-2009, 06:54 PM

This is all normal to feel like this!! You have so many decisions to make and hoping you made the right one can be uneasy. You sound like you know in your heart that you did make the right decision and now you just have to stick to it!! We must try to have faith and trust in our doctors and hope they continue to lead us in the right direction, however if at any time you don't feel comfortable - get a second opinion.

You have a beautiful family when you are feeling down just take a look at those faces and everything seems to fall into place!

Mary Anne in TX · 04-14-2009, 06:58 PM

Hey, Maureen. Being where you are is the pitts, but I'm betting most of us go there now and then before working ourselves out of that place. I was exactly there during the time frame you describe. And being a single parent increases the burden a bit. It comes with benefits, but adds some concerns. I've learned to talk to my granddaughter (9 yrs old now) about my fears and worries...not heavy duty, but honestly. She came to us during my 2nd year of treatment....so I became a mom again during my battle. But overall, it was a blessing....a reason to fight when I wanted to jump off a tall building!
For someone who is a "if it's available, I want it" kind of person, I was happy to receive every single chemo and herceptin treatment I got. My attitude was to hit it with everything I could while I had the energy to do it (diagnosed just before I turned 61). My radiologist asked me one day if I would just keep coming as long as they asked me to....I said yes. What they didn't know was that I had read a ton about just what they were doing and knew that it was the best I could do with what my insurance company would approve. I'd do some reading about the herceptin and keep getting input. None of these are easy decisions. There are no perfect answers.
I think I have said this before, but I think I'm really lucky that my onc.'s wife had BC (well that was dumb, uh....I mean he had lived through it with her....well, nothing sounds appropriate but) and is doing really well after nearly 15 years.
I think my onc walks on water, but I still question him and check up on what others are doing and what other major clinics and hospitals are recommending. One person can not know everything to do for us. Even the best is human!
Well, best wishes and peaceful moments in your journey. You will get through this phase....you will. ma

caya · 04-14-2009, 07:04 PM

Dear Maureen,

You are one brave warrior to be going through all this with two young children and no spouse to lean on - you are stronger than you know.

Don't worry about reconstruction right now - I did not do it, I doubt I ever will. Your body, mind and spirit need to focus on getting through the treatment... I know it seems like it will never end, and the fear is overwhelming - but I promise you Maureen it WILL get better.

Are you on any kind of anti anxiety/anti depressant medication? Don't be a hero, if you need it, ask for it.

Come here anytime ... we have all been there.

all the best
caya

Linda · 04-14-2009, 07:28 PM

Maureen:
You are in a really rough patch on this journey. I also did 6 mos of neoadjuvant chemo and near the end I felt pretty crazy. The combo of the waiting, the drugs, the nervousness about what will happen during surgery are all super stressful. One doc told me that neo adjuvant chemo is the most emotionally difficult treatment because it's like being diagnosed twice.
You will get through this and it will get better. I had very aggressive locally advanced diseased and I'm fine four years later. Also, from what I've heard, there is no evidence that more than one year of herceptin is helpful for non metastatic bc.
Of course you don't feel like yourself -- but you will again. Take care. Come here often. Don't question yourself. It's the situation, not you.
Good luck with your surgery.
Best
Linda

adrien · 04-14-2009, 07:32 PM

Hi,
I agree with most comments but want to know. Do you have a Breast care Nurse? They were my life lines. Anywhere, any time.

Jackie07 · 04-14-2009, 07:42 PM

Maureen,

I did not do reconstruction, either. I am still wearing all of my old
padded bras. I think you can take your time to make your decision about reconstruction.

Wow, May 5 is going to be your big day. Do remember that we are all rooting for you and cheering you on. You go, girl!

Paty · 04-14-2009, 07:43 PM

Dear Maureen,

I feel very touched by your words, and let me tell you that I can perfectly understand how you feel. I understand the myriad of fears that appear in front of us and that we do not know how to face. I can understand your sleepless midnights when the mind rolls and rolls with tons of questions and having no answers. I know we all understand you. We all have been or are going through the same, that is why we are here and you do not have to apologize for feeling one way or the other. You know you can always come here and we will listen, I know that sometimes we do not always know what to say, but know that we are here and we are with you. I send you a hug a huge one and I will pray for you tonight and for the peace that we all need in our minds.
God bless you.

Paty

WomanofSteel · 04-14-2009, 07:53 PM

I think we have all been where you are at one time or another. That is why we come here, to lift ourselves from this place. Relax, take a deep breath and take one day at a time. That is all any of us can handle. Hang in there, things will be fine.

atdec05 · 04-14-2009, 07:58 PM

Hi Maureen,

I think you're feeling the cumulative effects of all these 'toxins' that they're pumping your body with to wipe out any residual c cells.

Plus, you are getting steroids as pre-treatment to the Taxol, and that can wreak havoc with your emotions. I know it did with me at times.

take care, and lean on us!
Anna

Believe51 · 04-14-2009, 08:20 PM

Maureen, I am so sorry that your plate is this full and you are having to deal with that much. I do know that I have followed your journey since you first joined this family. I am amazed by you and your strength. Although you may not always feel that way I want to let you know as a bystander in your life I am so proud of you.

I am happy for you and your new counselor too. I wish you well and with much progress, this is important for you to find more of the peace you deserve. I already know that you realize that we will always be here for you, Sweetness. You are never alone on this journey.

I do echo the advice of a second opinion if you are uncomfortable with an answer. I have total faith in our OncoMan but there have been times during this journey that a second opinion was warrented. Not second-guessing the doctor even, just important issues. We do question and research on our own that allows more ammo to be taken to our doctor.

I wish you peace today and always. I say once more, you shall never walk alone!! We are always right here!>>Believe51

Debbie L. · 04-14-2009, 08:33 PM

Maureen,

I wish that we could fix this for you. But we cannot. We can listen with empathy and some understanding. We can send healing and loving thoughts (and we do). But ultimately, the journey through this is yours alone. I say this not to increase your loneliness but to support you in your explorations of it. YOU DO HAVE THE ANSWERS, right there at hand, within/about you. The answers are there, in whatever place you feel comfortable looking for them - they are there. In your heart, your essence, your spirit, your God, your guide, your Savior - whatever name resonates best with you - your support and answers are there. You only need to still the fears a little, and ask. I am sure of it.

How to still the fears? What helped and helps me is to remember that whatever happens, THIS moment, right now, is marred by my fears only if I allow that to happen. This moment, right now, is mine to cherish or to waste. If I obsess (and believe me, I know how to obsess), I waste this moment. We do not (alas) have as much control over what happens as we'd like to believe we do. You've made excellent and well-researched treatment decisions. Let them go. What happens in the future is not within your control. What happens RIGHT NOW, in this moment - that IS within your control. This moment - that's really all that we have. We can think, and rationalize, and deceive ourselves and others - with the illusion that we can control what comes. But that takes us away from what's real, which is right now.

The most helpful thing that I found, to get myself through a similar place to where you are now, was to say to myself: "do you want to waste this precious moment, right now, in fear or worry about what may happen, especially knowing as you now do, that your moments might be more limited than you'd imagined?". Well, I'd answer - "but I can't STOP thinking about my fears and about my loved ones". So ... (helpful little voice chimes in) ... "What if you have only a few precious moments left to you, and you've wasted them in fear and worry?" Hmm, well ... somehow that helped me to shift my perspective. LIVE RIGHT NOW. None of us knows the future. None of us wants to waste precious moments. What do we lose, if we see this urgency and new perspective as a gift, rather than as a curse? Nothing is lost but our time-wasting fear, and much is gained if we are able to embrace this moment, and all that it holds, with gratitude that we are still here (this moment).

This healing perspective doesn't come just by wishing it or realizing its truth. It comes from practice, and from support from others who've been there/done that. Please, Maureen, keep the dialogue going so that we all can learn from each other, and support each other.

I think that ultimately, these discussions are more important that the ones that discuss medical issues (which I also love - I am addicted to the science - what a paradox). But I do believe that the medical issues, even the life-saving ones, are ultimately of lesser importance.

How LONG we live is less important that HOW we live.

Love and healing thoughts,
Debbie Laxague

Jackie07 · 04-14-2009, 09:06 PM

Maureen,

Happened to see your 'spouse' comment. Trust me, sometimes it is better to be 'alone' than to have a big burden, especially at trying times. Do you have friends or relatives/neighbors help out with your children? I think there are some American Cancer Society local chapters that you might want to check them out. Hospitals often provide social workers to assist patients deal with their family situation. I hope you will utilize all
the services available. Let us know how things go, OK?
(Sisters are great! Are you the sixth child? I have three older brothers and two older sisters. And I am the baby. Very spoiled...)

ElaineM · 04-14-2009, 09:20 PM

We all understand what you are experiencing. Most of us probably have been there. Some of us may still be experiencing some of the same things. The cancer experience is like no other experience. You are totally normal. Anytime you feel like you need comfort feel free to log on. Come sit by the campfire awhile too.

04-14-2009, 09:24 PM

It is so normal to struggle like you are. We all have. The sickness, the baldness, the horrible illness from the drugs, the chemo, the struggle. We have all gone through it and all wondered if we would ever come out the other side of it. Then, many months later, we discovered our bodies, our hair, our lives somehow have come back. It is possible to come back from it, as unbelievable as it seems from when you are in the depths of despair. I am close to 3 years out, when I never thought I would get there, bald, sick, throwing up in terrible shape. I feel almost normal again, and you will too. Treatment is terrible, but necessary, but after it is over, you will find yourself on the other side. Just hang on.

DonnaD · 04-14-2009, 09:32 PM

Hi Maureen,
I wish we were close enough to have a cup of green tea, and share a huge hug. We have all felt like a "crumbling worrying blob" at some point. You have so much to deal with right now. I haven't read your blog lately but know in the past you were and probably still are dealing with side effects of treatment. Being an only parent has to add to your concern. My surgeon put my surgery on the fast track and I knew that was a good thing. But it also scared the heck out of me. The sooner you have surgery, the sooner you can get on with the next step. I'll pray for peace for you about your decision about no reconstruction. Go with your gut feeling. It sounds like you have a wonderful onc. but ask those questions. You are a fighter. You can do this! Look how much you have already accomplished.

My treatment was 16 months from surgery until I finished Herceptin. I was terrified each time something was over, like chemo, then radiation and finally Herceptin. I felt like I was no longer fighting. Yep, those comments about being over with cancer really get to me also. Only cancer survivors understand we will never be over with cancer... but it does get better. Time and faith ease worries and fears. I am waiting for a day I don't think of cancer once. I look back now and can't understand how I did the treatment schedule. We chose to do all treatments including radiation for 6 weeks, at a large teaching hospital 110 miles away round trip. It is a memory and yours will be also!

Hug those beautiful children, watch them sleep, listen to their sweet words, hold their little fingers and laugh with them. Know that many have you surrounded by prayers. God is good
Love,
Donna
PS Well said rl2. Welcome!

BonnieR · 04-14-2009, 10:43 PM

Maureen, you WILL get to a peaceful place again. The only way OUT is THROUGH. Today I was reading my journals that I kept during treatment. I expressed so many of the things you are experiencing now. The fears and worry. Second guessing. It was horrible some days. But it is behind me.
Would it make you feel better to get another opinion about your course of treatment? Just to get peace of mind? It does sound as though your doctor is sensitive and you trust her.
But I love what Debbie said. At some point we just have to trust the process and a higher power once we have made our decisions. Living a day at a time.
We all remember what it is like to be feeling as you do. Hard to believe, but some day it will be behind you.
Keep the faith.

Jean · 04-15-2009, 01:40 AM

Dear Maureen,
Oh those dark late nights which carry dark thoughts.
I think most of us have had many of those dark lonely nights...even those of us who have a spouse. It is still a disease that we deal with within ourselves. As women we not only deal with the dx. but worry about our families how the dx will affect them.

I call this "the dark what if worry thoughts" - well they come and go and is certainly part of the reality of the dx.
When these thoughts come (amazing how they will pop in)...remind yourself and concentrate on your treatment. Herceptin is truly a miracle drug for us.
You have as much opportunity for the treatment to work
so place your dark thoughts into that direction.

It is so normal to feel the way you do but as Debbie said we have choices along this strange hetic journey. We can stay knowledable about our treatment, work in harmony with our dr. (your dr. sounds great).

Sorry to say that worry comes with the dx. How you decide to deal with it is another issue.

As far as 6 months verses 12 months of herceptin.
I had the 12 months of treatment. If this is upsetting you I would ask my onc. to reach out to Dr. Slamon for a consult with your history and pathology for a second opinon on how long to continue herceptin. I am sure she will understand your need for additonal input. I have read aritcles on 6 months veres 12 months for early stage ...are you still in the trial?

Is the decision to have 6 months of herceptin based on the trial?

Keeping you in my thoughts and prayers.
Jean

jones7676 · 04-15-2009, 05:15 AM

Dear Maureen,

First of all, I believe your treatment plan is very wise and my gut feeling sends me positive vibes and it saying is that you will be fine for a long time.

I cannot tell you what to do....but I can say I understand what you are going through. I could not stand the responsibility of giving you"wrong" advice. I can tell you in retrospect of all my personal challenges that I would encourage you to push if you feel something is wrong and never be afraid to get another opinion about what is the "best" treatment. I believe my outcome might have been quite different if Herceptin was available to me right away.....but that does not stop me from fighting every day!

I hope these are the last of your challenges for quite some time - or perhaps for a long, long, long, time as you know there is research going on every day.

I can tell you despite a recent really depressed period I am recovering right now, trying to stay positive and believing I may still be around for quite a while despite all the challenges I face.

However, my nickname where I primarily get chemo treatment is "Mohammed Ali".... so do keep that in mind.

Shobha · 04-15-2009, 07:47 AM

Maureen,

My situation was very similar to yours. I had 6 months of very aggressive chemo treatment before the surgery. The point you are at right now is the most diffcult one. I can totally relate to what you are going through. But, I can promise that it will get better!

I too did not bother with reconstruction and have not regretted it.

Like you said, this is not your usual positive self and that part of your personality will come back full force after the surgery. Radiation and herceptin (rest of six months) will be much easier.

I was also given 54 weeks of herceptin since I was stage IIIB.

Praying for you and sending peaceful, positive thoughts your way...

hugs,
shobha