It is not normally like me......BUT......

Mary Jo · 12-02-2008, 01:16 PM

Good Afternoon her2 groupies.....It is not normally like me to be a "downer" but I'm kind of feeling like that the last 2 days and needed to vent here with those who understand.

The reality of this disease hit me AGAIN (every now and then I feel reminded of how cruel this disease is - less and less as time goes on but circumstances and passing of loved ones brings it back) I've been struggling with sinus issues (or so I think) the past few months and just recently went on an antibiotic for it. I am feeling better but still have some foggy feelings in my head. The good news is that the headaches I was experiencing (waking me in the night top of head/forhead and back of head) - I haven't had since starting the antibiotics but still have some pain in lower skull area by neck and that is off and on but less since I started the antibiotic. I know my symptoms make no sense (and you KNOW where I'm heading with this 'cause we're all alike that way) but I am certain I have brain mets and it's bringing me down!

You guys know I don't live "their" and hate being negative and downcast (and nobody would know I feel this way except you) but the last few days I've been feeling blue about this cancer stuff and feeling like it's just a matter of time anyway. What a horrible attitude....I know!!! I also know I will get over it and life will go on but for today this is how I'm feeling and I needed to share it with my support system here.

I do go in for my 6 month check up on Dec. 18 and will at that time mention this all to my onc. (if the problem still exists) and then I know he will order a brain MRI and that scares the "YOU KNOW WHAT" out of me. I don't want that. Those scans etc. always bring me way down and always remind me of the world I'm living in and I hate it. On the other hand IF I have a brain MRI and hear it is all clear (oh surprise surprise there is nothing up their

) I will feel very relieved.

For now though I just needed to share my heart with you guys 'cause you all get it. I've also been praying and asking God to help me remember that my life is in His Hands and fretting over my tomorrow's is useless. As a little card I keep hanging by my computer at work says "don't worry about tomorrow...God is already their."

Thanks for "listening" you guys!!!!

Love you LOTS.

Mary Jo

Rich66 · 12-02-2008, 01:21 PM

I hope all is well with the MRI if you have one. I've been wondering whether CT is sensitive enough for brain mets. They have done two of those on my mom.

naturaleigh · 12-02-2008, 02:12 PM

Sorry I missed wishing you a HAPPY BIRTHDAY!!!

Could some of your "blues" be caused by your recent BIG event? I am not far behind you in age. For some reason; maybe because it is just before the BIG 50, and the last of the 40's this Birthday has me down a bit. I don't know how you feel about the winter time, but if you don't like the cold, you have been hit with a double wammy since your B'day is slap in the middle of the cold season. I know many people who get down when it gets cold outside.

Also, EVERYBODY has down days, including us before our diagnosis. I think now it just makes us more aware and more upset because we have had our fair share of the "blues". My bet is your headaches are nothing to worry about.

I hope your day gets better. My presciption to you is to put on some warm snuggly PJ's, make a cup or two of hot chocolate, build a fire if you have a fireplace and curl up on the couch with a good book or puzzle. Turn the radio and tv off and enjoy the peace and coziness the winter time brings.

My prayers are with you

Louise O'Brien · 12-02-2008, 02:15 PM

Mary Jo:

I'm hoping you're just dealing with a garden variety sinus infection (besides it's that time of year) and that in a few weeks this will just be a bad memory.

This is the awful legacy of this disease - wondering if or when the other shoe will drop. That's our reality, that's what we always have to live with and it's hard to explain it to anyone else. As positive as we try to be, we can never escape that nagging worry. It doesn't matter what stage we're at, how large or how small the tumour was or what our markers were - it continues to haunt us.

We try our damndest not to think of it because we want to enjoy every single day - but it stalks us whether it's a conscious worry or something that we try to ignore.

I think a lot of us have those days when we identify an apparent symptom that makes us worry. We just don't talk about it. We don't want to worry our spouses and we don't want to depress our friends.

So we carry it with us and usually go through the worry alone.

I wonder if the professionals around us are as familiar with this "syndrome" as we are. Is it similar to some kind of post traumatic stress syndrome?

I guess I'm just saying that what you are going through is so very normal and perhaps it hits those who fight so hard to stay positive just a little harder?

I think we're bound to have these days. How could we not? I hope this is the case with you. You've been such enormous support to so many on this board and I know we're all hoping this is just a temporary glitch.

Hang in there.

Mary Jo · 12-02-2008, 02:24 PM

Thanks Rich, Anita and Louise......

Rich, I did break down and call my oncologist's office and they are in the process of setting up an appointment for a brain MRI for me...YIKES!!! Not sure what to think....of course I want to say.....it will all be fine....but honestly, I'm a realist, and I don't know that.

Anita, nope....it isn't an age thing with me. I don't worry about things like age and don't mind getting older. As a matter of fact I enjoy getting older

I think it's a combination of that 6 month check up coming up (always a friendly reminder of what we've gone through) and these head issues and not wanting to "tell" but knowing I need too.

Louise........yes, it is our reality - our world - as it were. No matter how hard we try to stay positive and try not to let the "what ifs" get to us.....we are human and at times it all just gets the best of us.

Thanks for your support you guys...it means a lot to me.

MJ

schoolteacher · 12-02-2008, 03:20 PM

Mary Jo,

I hope you had a happy birthday. I am sorry you are feeling down. Are the days really short where you live now? When the days get shorter, and I don't see much sunshine it affects my mood.

Let us know when the MRI is scheduled. I will be praying and thinking about you.

God Bless You, and I pray he will send you some peace of mind.
When my journey started in February you were one of the people who gave me peace to continue through this journey, so I truly hope the same for you.

Amelia

Gerri · 12-02-2008, 03:26 PM

Mary Jo,

So sorry to hear that you are on a downer - it happens to the best of us, no matter how positive we try to be. Our lives have been changed forever and sometimes we just can't help but worry. I know that you will be back to your perky self soon.

I had my last checkup in October. Prior to that I was experiencing headaches (more than usual) and felt like I was a little spacey (again, more than usual) and off balance. Normally I would just pass this off as headaches and not mention anything to my onc. Well, I decided that if I didn't have it checked out, it would continue to worry me. During my checkup I made sure I told my onc and even played it up a bit. Since her "speciality" is brain cancer she immediately started asking me questions. She recommended a brain MRI and I (of course) agreed. I had it done about a week later and had to go back for the results. Everything was fine and I was able to let go of the fear of brain mets. I am so glad that I had the MRI because I continued to have headaches and was still walking a bit off at times. I am fine now and am really glad I pursued this.

The brain MRI for me was relatively easy - considering I am claustrophopic. The breast MRI for me is so much harder to endure. Prior to the exam I don't look at the tiny opening my body will be entering and I close my eyes before I go in and keep them closed the entire time.

Best of luck to you. Let us know what you find out.

BonnieR · 12-02-2008, 03:55 PM

MJ, just to say I know how you are feeling. I went through a very similar experience recently. Right down to the brain MRI. It was negative for cancer but showed some other potentially scary thing for which I had to see a neurologist and THAT turned out to be nothing either! So keep the faith. Whatever the outcome, you will feel better knowing.
I must say I much prefer living in the "ignorance is bliss" state! But I guess we don't have that luxury anymore.

Mary Anne in TX · 12-02-2008, 04:15 PM

Mary Jo, do the brain MRI with joy. Then you get to hear your onc say, like mine did, "there's nothing up there"!!!!
Well, I knew that for sure!
I'd go with the hot chocolate and jammies thing myself!
I'm thinking awfully good thoughts for ya!
ma

Shobha · 12-02-2008, 04:25 PM

Mary Jo, I have read so many of your posts and you are such a positive spirit and give us all strength.

You will be in my prayers and wishing that the headaches are simply sinus related and nothing to do with the cancer.

Leslie's sister · 12-02-2008, 05:12 PM

Oh Mary Jo..... you carry the world on your sympathetic shoulders. Of course you get scared too sometimes. Totally normal. I'd would be telling less than the truth if I said that I was never scared. Though I know that you hate scans, nothing less than a scan is going to put this away for you. I will pray that you are able to get an appointment very quickly and that the news is great. I will also pray that God comforts you, giving you the peace of knowing that He has got you covered. I've more than a strong feeling that this is all totally sinus related. Otherwise you would not have had relief you had from the antibiotics. Please keep me posted with an email once you have results. I'm not the best at checking this site these days....

Love you so much sweet sister!

Lisa

chrisy · 12-02-2008, 05:13 PM

Well Mary jo,
You pulled me out of hiding (I've been needing a break myself). But I couldn't let your post go without response. I have no wisdom, I just wanted to honor the way you are feeling and thank you for sharing it.

Yeah, this is the family that "gets it". Even those (like you) who will most likely only view cancer in the rearview mirror know that it shakes your reality forever.

Everyone else looks at you and sees you are fine and expects you to be fine...and can't understand why you would even think such thoughts.

Mary Jo, you are such a source of hope and encouragement for all of us, thank you for the gift of letting us lift YOU up for a change.

Keep your eye on that card you have hanging by your computer. That's the reality.

And it's much better than the one I have behind me that says "free your hair and your mind will follow"...but that's another story.

Faith in Him · 12-02-2008, 06:02 PM

Dear Sweet Mary Jo,

We understand. We surely do. I am glad that you shared your feelings with us. I know that the days leading up to my recent scan were so difficult and my heart goes out to you. But as you know, God is with you and He alone will get you through this. We can rest in adversity because of HIM.

I have had a brain MRI and it was pretty easy but of course, waiting for the results is extremely difficult. I think that it is a good sign that you feel better after taking meds.

You are never far from my thoughts and are always in my prayers.

Love & Hugs to you,
Tonya

Mary Jo · 12-02-2008, 06:43 PM

Thank you everyone.....you have uplifted my soul and THAT'S why I brought my heavy heart here. My heart is feeling lighter now. Thanks!!

I spoke with my oncology nurse later this afternoon and we talked in length about my symptoms and the lack thereof. (she also use to be an ENT nurse) She feels that yes, we need to keep brain mets on my "list" BUT she feels more than that - that what I'm experiencing is sinus related. First of all, since I started on the antibiotics Saturday, I haven't taken any Sudafed (and up until that point I was taking anywhere from 2 - 6 per day - along with ibuprofen) and because the headaches during the night have stopped since I have been taking the antibiotic. I see my onc. on the 18th of Dec. and we have decided to wait to see what happens to the "symptoms" up to that point. If I am still experiencing any of them she is confident that a brain MRI will be ordered just to "rule it out" (her words) and she said if I were to twist their arms, either way, one would be ordered. I have decided to wait until the 18th to see how this all goes.....

Anyway, thank you again for being here for me and helping me to feel better 'CAUSE I DO! God has heard your kind, heartfelt prayers and He has given me that peace you prayed for. Thank God for each of you.

Love,

MJ

P.S. Chrisy PLEASE come back a little more often - I've missed you!

Patb · 12-02-2008, 06:48 PM

Yes we do get it, we all go through it and you have
my support and prayers that everything is ok. I have
had a brain MRI and had to have an open one because
I could not go in the tube. Panic attacks are not pretty.
The open one is not really open but you can see out and
they put a mirror so I could see. Really nice people, even offered to hold my hand. Good luck and take care.
patb

vickie h · 12-02-2008, 07:55 PM

Mary Jo,

Thank you for sharing your feelings with all of us. we're here for you.
I, too, had headaches and completely impacted sinuses and had to go on antibiotics. I had brain scans/MRI and no mets, but I know how you must feel. We are always waiting for the "other" shoe to drop. It is only lately that I've come to realize that that " other" shoe is going to drop for all of us here on Earth. Some of us know it, others just don't think about it or seem oblivious to it, but the fact is...it's coming someday.

The state of the world we live in is in turmoil and we are all a part of that. You are sensitive to what is going on around you, making you feel worried as most of us are. Know that we are here for you, that you are in our prayers and that we love you. vickie

Bill · 12-02-2008, 08:25 PM

You hang in there, Mary Jo. I'm sure your headaches are sinus-related, but just for your own peace of mind, maybe you could try to bump up the MRI a little. Maybe a little "white lie" about the "ongoing" headaches you are experiencing. Hey, I'm just saying.....This stuff is stressful enough without prolonging the waiting, right?

Melissa · 12-02-2008, 08:37 PM

I know exacting how you feel. For the past month I also have had headaches along w/ pressure. I started on Claritan and now I'm better, as a matter of fact the headaches are gone. I live in Va and this year the allergies seem later than normal. For several nights I would awake with what seemed to be a pressure headache at the back of my head. We ALL have those days, for me sometimes more than a few. But I believe you are okay!

sassy · 12-02-2008, 08:44 PM

"Worry does not empty tomorrow of its sorrow, it empties today of its strength."

Marejo,

You are such a strong and supportive person, but we all know that worry worms its way into our minds at least once in a while. It is then that we lean on our faith and our friends who do "get it". Thats why we all belong to this support group-----------to support.

We love you,

caya · 12-02-2008, 09:16 PM

Mary Jo,

Sorry you have been experiencing headaches, and now have been worrying about possible brain mets - have you noticed at all whether your headaches are weather related? I get bad headaches whenever there is moisture - rain or snow. A cousin of mine gets them too and I will phone her and ask if she's had headaches - last week we had alot of snow here and we both had headaches most of the week. I got these before BC, but of course now if they go on for a few days I start thinking like you... I've always been prone to sinus headaches as well. A few years ago I went to an ENT specialist who did a CT scan of my sinuses which revealed a congenital defect - I have the sinuses of an 8 year old - they could not drain properly, so the smallest little cold would turn into a full blow sinus infection. Funny thing - I think chemo and/or Herceptin did something good in this regard, as I have not had one sinus infection since this nightmare began..

On the other hand, constant UTIs have plagued me. My onc. and GP agreed to put me on Macrobid 100 1x/day as a prophylactic for a few months to see if this will help. I sure hope so, nothing else has worked.

Will this ever end? Not likely, we just have to cope as best we can. You are allowed a few down days, you would not be human if you didn't have them once in a while.

all the best
caya