Decided to post...because I know you will understand...

mmoons · 07-28-2010, 12:52 PM

Hi all-

I am unexpectedly becoming very emotional and weepy (in a packed train station in Toronto heading home from a business trip) as I type this. I have debated posting. But why not? I know all of you will understand like no one else can.

As you can see from my signature, I am done with all my treatments. What a wonderful thing. I am so grateful...every day! I have been determined not to let cancer rule my thoughts. I am following my exercise efforts. I am on a strict diet of more veggies and less alcohol. I let the little things go. I am getting on with my life. I have also done my best to not let the aches and pains of my healing body worry me. But now...

I'm scared.

There...I said it. Very difficult for me to admit. My fear comes from some pain I have had for ever a month. I have a back ache that is probably nothing more than that: a sore back. It started over a month ago in my lower back. The last couple days the pain is farther up my spine but still very sore around my lower back. Not down my legs, like a sciatica pain. More like a constant, steady ache in my lower, and now middle, back.

Add to all of this that I lost a dear friend this week to this wicked disease. Leah was as special as they come! This video gives you a tiny peek into her spirit. She held my hand and taught me so much. She was my friend first then became a cancer buddy at the "Baylor Spa". I'm so sad.

http://cbs11tv.com/video?id=56287@ktvt.dayport.com

I have scans on Monday. They are regularly scheduled. I have not called my onc about these aches because I knew I was due for scans.

By the way, I wanted my port taken out back in May. My oncologist, who I love, asked me to wait until these August scans. She felt confident they would be fine but is just goosey enough about Murphy's Law that she wants to wait to see scan results. Leave it to me to overanalyze that too.

I'm sorry I am all over the place with this post. But I already feel better. I guess this is just a part of it, right? This fear is a part of my new, boobless normal.

Thank you for being here for me.

Love you all,
Maureen

tricia keegan · 07-28-2010, 01:11 PM

Maureen, you had a special friend in Leah which comes across in the video so much so, that even the newsreader was emotional. I'm so sorry she passed, she looks like an amazing lady.

As to your back pain, my own experience earlier this year may help inspire you with some confidence I hope. I had the same persistant pain in the same area you do, the bone scan lit up, the mri was inconclusive and the pet/ct was negative! I did'nt know what to think and nor did my onc, it was too small to biopsy so had to wait two months to repeat the mri which thankfully was negative

Weird thing is, I did'nt even notice the pain again once I heard those words lol...

I really hope your own scan will show the same, soon after all this I developed a severe bout of sciatica so maybe that had something to do with the bone scan lighting up, I dont know but just glad it was'nt cancer.

My best wishes to you, I wont say dont be scared because I know you will, but know too that many of us have gone though this with a happy outcome and you may too!!!!

Jackie07 · 07-28-2010, 03:09 PM

Maureen,

I've been keeping my port since summer 2007 because the technician always had trouble accessing my veins. My left side was paralyzed one time back in 1990 after my brain surgery and my right side has had 11 lymph nodes out. A year ago I let one of the 'guys' try 'not' to use the port, they ended up have to make a cut on my fingertips to squeeze out the blood. I showed my bandaged fingers to my oncologist a couple of hours later during my routine appointment. He agreed I should keep my port. "Flush it every six weeks," he said. [He had implied in my previous appointment that I might have been too attached to my port because I had kept it for so long...]

My oncologist probably thought that I was worried about recurrence too much to let go of the port. But I only did it for the convinience - so that I wouldn't be poked so many times everytime I had a blood draw. Plus I do want to reserve some useful veins whenever I am having scans that requires dye injection or IV.

The standard practice (I've been told) is to keep the port for one year after completing all the treatment. I know you can't wait to get rid of the 'stuff'. Just thought I would let you know that your doctor was just following the general practice regarding the port situation.

Mary Anne in TX · 07-28-2010, 04:42 PM

Maureen, you've earned the right to be afraid, goofy, whatever comes. I'm hoping your back pain is related to the sadness you feel about your friend...totally don't understand that, but hope it is. Sometimes fear washes over me & I have to have long ridiculous conversations with myself to get through the nuttiness, but it seems to work for me.
I still have my port and am not interested in losing it as yet. The last try to access veins was awful, so I think I'll just keep getting it flushed and hang on to it for a while.
I think you're terrific for sharing how you really feel. Love and prayers, ma

BonnieR · 07-28-2010, 04:52 PM

Yes, "the new boobless normal"!! We would all react the same way as you, I think. I expect it will always be that way. But we need to remember that even cancer patients get other regular ailments like sciatica (or whatever). Everything just takes on such gravity once we have had cancer.
I have learned to try not to assume too much until I have facts. There will be plenty of time to be upset later, if ever. So don't do it prematurely! Keep the faith.

CarolynME · 07-28-2010, 06:37 PM

Maureen,

I was following Leah's blog postings on Caring Bridge and she seemed like such a wonderful person with a great sense of humor. I sobbed a number of times when reading the postings of the last couple of weeks, and I am really sorry you have lost a great friend. I have to admit I have been feeling fearful too because my platelet counts were too low to receive treatment, so I understand.

You have received great advice from the Tricia, Mary Anne, and Bonnie, and I am praying and praying and praying that all your scans will come back NED.

Love,

Carolyn

Laurel · 07-28-2010, 06:56 PM

Ditto to Carolyn's (whose Doggie is darling!) post....praying and praying!

I am so sorry about Leah. Sometimes when we are hurting emotionally our bodies mirror the pain in our hearts. I am hoping this is one of those times.

lkc Gumby · 07-28-2010, 07:18 PM

Hi Maureen. I am so sorry for the loss of your dear friend.
and I am sorry that you are in such a fearful state. I can tell you that since Chemo I have had back and bone pain that I have never had before " BC"/ of course I worrried and felt somehow ut was realted and the beast was back. The reality is that back pain is very common and not always a bad sign. Sometimes it simply residual effects ot the cytoxic chemo.
After over 5 yrs and clear PETS very yr, I know now that my back pain is simply that.
I hope you are back to a better place soon!

Jean · 07-28-2010, 07:56 PM

Dear Maureen,
Thank you for sharing the video on Leah, what a very special lady and great loss for all.
Is it any wonder you are in the train station feeling weepy? Not at all, as I viewed the tape and thought of you in the train staton filled with busy people going about their business you are in the middle of all this life and dealing with the loss of your friend. As we are among so much life and energy we realize how precious everything is while at the same time dealing with the dx. of cancer.

You just completed treatment and are still adjusting to that. I remember when I completed herceptin I was nervious about not having the treatments.

The only answer is time - time to adjust, feel and heal. Be kind and patient with yourself. Each day then months, and finally a year or two brings peace and confidence back.

Keeping you in my prayers for great news on your scans.

Hugs,
jean

sassy · 07-28-2010, 08:23 PM

Maureen,

Once treatment ends, we all feel a little lost, very vulnerable, and as if we are no longer doing anything to actively fight. So its normal for fears to increase. I went through something similar--only my hip. I wouldn't tell anyone--didn't want to validate the fear. Waited until my next apt., told the onc, went straight to x-ray--and found a bone spur on the upper portion of the hip socket!

The fear will lessen in time. I will keep you in my prayers, praying for clean scans and aches other than cancer.

Isn't it wonderful to be able to come here and voice our thoughts, fears, doubts, troubles and know everyone understands and cares!

Deep breaths, we're right there with you.

imdavidson · 07-28-2010, 11:23 PM

Maureen,

I'm so sorry to hear about your friend, Leah. And I hope that your back pain will prove nothing to be concerned about.

I see that you're in Dallas and so this may be too far away for you to consider, but there's a wonderful program in Southern California through a nonprofit organization called, "Healing Odyssey." Every few months they hold weekend retreats for women who have been through cancer. I went to one while I was going through chemo and the experience helped me cope with many of my fears. To learn more about Healing Odyssey, there is a video on their website.

Best wishes to you.

Idelle

SoCalGal · 07-29-2010, 12:34 AM

Hey Ms Moons,
Just wanted to weigh in and say that it is very common to think the thoughts you are thinking and to feel the fear you are feeling. Been wrestling with this subject for 14 years.
It's good you wrote & got the thoughts out of "you" and contained for the moment.
Logical action - you will get a scan and get the information. In the meantime, you must have talks with yourself and say, "self, do not torture me with un-necessary worry and doubt!" It's always work to keep the mind from creating more fear than necessary. I'm sure your back is just sore. Regarding your port - if that is not okay with you - have it removed. I'm all about taking control of stuff. I don't know if it's an effort to save you a procedure "just incase" or an insurance thing but I know I'd want it out and wouldn't care.

Hope you are feeling better after reading the great responses...love, hugs, Flori

Pam P · 07-29-2010, 06:29 AM

Maureen -
I am so sorry about your friend. It's a hard loss.

I have a book to recommend. "Dancing in Limbo: Making Sense of Life after Cancer " by Glenna Halvorson-Boyd and Lisa Hunter. I don't know if this book has been sited on this forum before or not. I was given this book by someone at a cancer support group years ago when I was right where you are at today. Having finished all the treatments, scared, not knowing where my life would go next. It is written by 2 survivors, not breast but other kinds of cancers, but I thought they had gotten inside my head and knew exactly what I was thinking and feeling. I know I felt much better after reading the book. I'd forgotten about it, but might have to read it again.

I'm going to be waiting to read about your scan results and praying that they are all clear. Pam

Emelie B · 07-29-2010, 08:03 AM

Hey Ms. Moons- you came to the right place. You know we all understand and have walked a mile in these heavy shoes. As the other ladies have suggested, try to read one of the books or attend a seminar. It is very, very hard to not think that every ache and pain is not cancer, but chances are it is not.
Get your scans so you know for sure what you are dealing with and then you can move forward.
For me it is always about moving forward. I will not let cancer keep me from my life. It is mine and cancer can not take it away from me with fear, treatments, or whatever it throws my way.
Listen it upbeat music, dance in the sun and go forward.
We will all be waiting to hear about your scans.
Praying everything is fine.
Enjoy your weekend with your family and DO NOT WORRY! It never ever helped anything.
Best to you,
Emelie

mmoons · 07-29-2010, 08:08 AM

Thank you all...so much! You have lifted me up! And given me some great ideas/tools to stay sane. Thank you for the book recommendation, the video, the loving words and for the non-judgemental shoulders for me to lean on.

Each and every one of you is such a blessing to me!

Love,
Maureen

bejuce · 07-29-2010, 11:59 AM

Oh, Maureen, I'm sorry about your friend and your stress and fears. I read a spiritual book recently written by a hospice chaplain that worked on ground zero on 9/11 and later had breast cancer. It is a book of essays beautifully written that helped me on my emotional and spiritual recovery. The title is called "The Voice That Calls You Home" by Andrea Raynor. I heard about the book on NPR and she is great. It may help you deal with your loss.

As for your stress and fears, I had the exact same thing happen to me a
month or ago. In my case, the pain was in my buttocks. I had clear scans and the pain went away. Just something that we have to
live with in our new boobless normal!

Good luck to you, I'll be praying for clear scans to you. I
follow your blog and you always bring a smile to my face with your positive attitude.

Big hugs,

Marcia

Sherryg683 · 07-29-2010, 12:34 PM

We are like shell shocked veterans. We put so much into fighting the battle that when it's over, we look back and wonder how we made it through it. I was on such a high when I was told I was NED but it only took a few weeks for the realization of what I had been through and all my fears to hit me like a rock. It's normal. I did a lot of crying in the shower, I would get in my pool and go underwater and just scream. It felt better to let these emotions out and I think it's more healty. As far as your aches and pain. Our body has been in a battle and it's going to hurt. Chemo is tough stuff. I hurt in places that I didn't think could hurt for probably 2 years after I finished chemo. When something would quit hurting, something new would pop up. For the first 2 years after chemo, I had scans done every 3 months, nothing ever showed up. Now being an old veteran of this, I don't freak out over every ache and pain anymore. There's life after this war, you just gotta take it a day at a time and deal with it the way that is most natural to you...sherryg

Sherryg683 · 07-29-2010, 12:43 PM

I just want to add, I also lost several people very close to me of cancer, while going through this. My brother and I was diagnosed a month apart. He with melanoma. We often did chemo together. He died 2 years later,I was with him when he passed. It was so stressful and heartbreaking to watch him deteriorate while I was getting better. It still hurts so bad when I think of it. He told me something once it was "I prayed to God that he not take the both of us, mom couldn't take losing us both". Now he also said that he didn't volunteer to be the one to go..lol. I often think that maybe God did listen to his prayers and that may be one of the reasons I'm here. I'm sorry for the loss of your friend, she sounded like a wonderful person. I like to believe my brother is watching over me as I'm sure your friend is now....sherry

ElaineM · 07-29-2010, 09:17 PM

I am sorry to hear about Leah. I am sorry you have been feeling a little down. That is normal under the circumstances. We all get moments or days when grief or worry about our health interfere with our normal routine. Be extra good to yourself during those times. Try to enjoy the weekend. Try not to think about the upcoming scans. I have my fingers crossed for good scan results. Take good care of yourself.