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

[Sherryg683]

MJ, you have always been such a support for all of us when we need it, of course we will be here for you. I understand how you are feeling completely, I get so down at times that this nightmare will come back. Even in my good days, I carry around this sadness within me, nights are terrible at times. I too am coming up for my scans in January and I get more nervous as they approach. Headaches..been there too. Your symtoms sound like the ones I have continuously had. My headaches would get so bad at times,they would radiate around my head. I have insisted on regular brain MRI's when I do my scans every 6 months. It makes no sense to me checking out my body and ignoring the brain. My Oncologists jokingly calls me the "crazy brain lady" and says he has more brain MRI's on file for me than he needs. They have all come out clean. Headaches were due to sinus problems, neck problems, stress..who knows. You are doing the right thing having it checked out, we have to stay on top of things...I still haven't adjusted to this new "normal" that we have...sherryg683

[Lien]

Hi Mary Jo,
Been there, done that!

In addition to what everybody else suggested, keep in mind that you can have a bacterial sinus infection on top of a viral or mold issue. The antibiotics will clear up the bacterial infection, but not the other two. An allergic reaction to mold could make things worse. The "brainfog" can be an allergy symptom as well as a sinus infection thing. It might help if you started taking probiotics. They help keeping the good bacteria in your system, that otherwise could be killed by the antibiotic. Good bacteria keep molds & yeasts in check. It's a delicate balance.

I'm no doctor, but to me it sounds like all your symptoms could be complained by a sinus infection and perhaps a (temporary) allergic reaction.

Hang in there and let us know how it goes.

Hugs

Jacqueline

[Lien]

Err. I meant explained, not complained

Am having a bit of brainfog today myself. The drainpipe burst last night, causing the sewage to back up into my house. As I'm extremely allergic to molds, just a bit of moisture can make my symptoms worse. This was a lot of water...

Am dealing with insurance stuff.

Jacqueline

[nitewind]

My dear sweet friend, how I would love to give you a big hug! I know you are scared and for me, waiting to know something made things so much worse. I think I would try to bump up the Mri. Just for my own peace of mind.
I always look forward to your posts, you are always so uplifting, now it's our turn to do the same for you.
For now, put those jammies on and have that hot chocolate and let your mind rest. You know that God is with you and we are all thinking of you.
Love you, sweetie

[Darlene Denise]

MJ: We all know and feel your fears. The "cancer coaster" never lets you off and is one scary ride. Everyone with Her2 and mets is all too familar with the fear of brain mets. Unfortunately, my brain met with mets the end of August. Scary, sucky stuff!! I highly unrecommed getting them.

Anyway, I am compelled to post that no symptom, no matter how small, should be discounted when it comes to brain mets, especially for us Her2 gals. The key to the best treatment options is catching them while small in number and volume. If you do have them, you will only help your circumstances by getting them as early as possible. I recently visited Dana Farber Cancer Center and the onc inquired how it came to be that they were dx so early. Vigilance and reconigzing the high risk in the HER2 population is what kept me on top of it.

An anti-anxiety drug like xanx or atavan might be of help to you while you get through this. I try to never take them, but when facing this situation, I do.

I have had several "nothing there" Brain MRIs and the good news and relief is so worth going through the "scanxiety." You will be nothing but anxious while you wait it out, so, I say, go get that sucker over with and get some good news to enjoy over the holidays!!

Fear makes us weak and alone which doesn't do anything to help us battle on. Trade it for your faith; strength and those who love you will help you keep up the constant battle we always will have in our lives.

Sending you all of my good vibes and best wishes for only good news!!

LOL

Darlene in Virginia Beach

[StephN]

Hi Darlene Denise,
Welcome to OUR very special and exclusive club. Only the BEST are admitted!

Best FIGHTERS, that is. Glad you are in control of your funky brain mets and are seeing the best people for that.

Mary Jo -
We will LET you have a scare once in a while, and even let you worry about that is bothering you!
You approached the problem with knowledge and went to your treatment team - taking some action to get a hold of the "root" problem.

You are not the "stew in your juice" type that I can see, and will take this on for better or worse.

My vote is with the others here that brain mets is NOT the problem. I get sensitive to Atmospheric Pressure drops, causing headaches at times.

Are you using Saline solution in your nostrils liberally? I find this helps me a lot.

[basset girl]

Mary Jo, you are such an inspiration for me. Your posts have always helped me so much. But I know what you mean. Sometimes the worry and fear just overwhelms me. Sending you a hug and prayer that all will be well, just sinus stuff.

Nancy

My favorite scripture: Philippians 4:13 - I can do all things through Christ who strengthens me.

[Darlene Denise]

MJ: I forgot to mention that since your remaining pain is at the base of your skull AND neck, contrast MRIs might need to be done on your cervical spine along with your brain and brain stem.

Several posters seem to be focusing on the headaches that have subsided as a reason to think it's not mets and to wait it out. It is not likely that sinuses are causing skull base and neck pain. It could be nothing (hope so!) skull, bone or brain mets.

I still say, don't assume and continue to wonder, check it out with a discussion with the onc NOT his/her nurse. I know he/she would want to know about these symptoms asap and will give you the best advice. If you wait until the 18th and scans are in order, you will be dealing with Christmas week and frustrating delays.

Faith in place of fear!! Hope you will post soon that all is well!!!!!!

All of my best to you...

Darlene in Virginia Beach

[hutchibk]

MaryJo - yikes. You basically posted for me. I have had at least a 3-4 week struggle with so many symptoms that can't be explained, that I have been ready to just go out back and have myself shot... dizziness, queasiness, lack of appetite, headache, weakness, shakiness, general severe and unexplained malaise. But the most overriding symptom has been the BLUES. I have been finding myself more and more remote, not answering the phone, and just going underground... I have looked for answers from my Med onc, Rads onc, ENT doc, chiropractor, counselor and massage therapist. The prevailing opinion by at least half of them is that it is mostly a depression that I have sunk into without realizing it. We believe that I did have a sinus infection at one point that has been treated, and possibly have cedar allergies that exacerbate it, but there is no logical medical explanation... ALL my CBC and TM numbers look GREAT and I am not running fever, etc. I am slated for Chest/Abdomen/Pelvic CT, MUGA and brain MRI next week just to be sure we aren't missing something. (and to add insult to injury, I have been having a new flare up of sciatica pain/problems and one of my meds caused restless leg syndrome last night - so I have had a series of mostly sleepless nights on top of everything else.) This is miserable, but my onc says it is not unheard of to have a slump upon changing treatments, especially once we have been on the treatment treadmill for a long time.

I will start back on my Remeron tonight in hopes that it will start to give me some relief. But I do admit that I have had increased fear and worry over the last 2 months, just not as "up" or confident as I have been for the last 4-5 years. My onc says he has noticed the mental change in me ever since just before my brain IMRT treatments.

Yikes. But I am glad we are looking at it and trying to clear it up...

[Mary Jo]

Thanks everyone who posted since my last "thanks everyone!" Today is a new day and a better day. I, too, believe it is sinus related (throat issues also) and believe that things are getting a bit better - although not gone. I do remember last year addressing this same type of "stuff" and was also put on Zyrtec for allergies as my PCP felt that was the issue - WHATEVER!!! LOL...they all have a "guess" in it I guess. Anyway, after speaking with my oncs. nurse yesterday and her questioning my "past" sinus issues (if there were any) - I forgot - that most definitely YES there were. Also, I always seem to get pain in the back of my head near the base of the skull when I get these type of sinus/allergy issues. This is most definitely not the first time. After speaking with my oncs. nurse she told me that not only do we have sinuses in the front and top of our head (where most people's pain and pressure are) we also have them in the back, near the base of the skull and there are a lot of people who have pain their also. So..........long story short (ya, right...this is me we're talking about - hehe) I will pay attention. Yes, Steph, you are right...I am not the "stew in your juice type" and will do what I feel needs to be done. For now I will wait till the 18th because I believe it is nothing HOWEVER I am not the "bury your head in the sand type either" and realize, of course, I could have brain mets BUT I don't think I do. So...I will wait.....take my antibiotics and speak with my onc. on the 18th. I have a feeling he will want to order a brain MRI because that one time I had the pain in my leg for awhile and I told him about that he wanted a bone scan even when I asked him if we could NOT do that. Oh well...time will tell...for now though....all is good......

As Dori Day once said (I'm dating myself, aren't I?) Gay sa ra sa ra...whatever will be...will be... the futures not ours to see.......gay sa ra sa ra. (LOL is that cheesy or what???)

Thank you everyone.....and yes, I'll keep you posted. And you know what??????? I hate this disease and what it does to us emotionally. Although I REFUSE TO LET IT CONTROL ME most of the time.....sometimes it does and that really PISSES ME OFF. (excuse the harsh language but this is cancer we're talking about here ..... I can think of a whole lot WORSE language I could have used and didn't)

Love to you....

Mary Jo

[dlaxague]

Brenda and Mary Jo,

I'm of course not glad to hear that you're feeling down, and I send you many good thoughts and prayers for improvement.

But at the same time - I'm really glad that you posted with honesty. I think that it's seductive for us (cancer survivors) to believe that we must hold ourselves up to an unrealistic standard of perkiness and optimism, at all times. But life, cancer or no cancer, is full of ups and downs and really - there's no benefit to denying or trying to fluff up the downs.

Of course we don't want to get stuck there, in the downs. Knowing when we're stuck is probably the trickiest part. But if we do not acknowledge, share, and allow the downs, we are denying part of life. I think it's NORMAL to be in the depths sometimes. I think that if we allow ourselves to go there, rather than trying to fluff ourselves up and put on the happy face, we can move through those depths and emerge a little more worn but deeper/wiser/richer, and ready to carry on.

Even better, if we have a place to talk about the doldrums (like right here), and if we have others who understand and do not try to fix us but rather simply hold us with love and empathy - again I think that we move through and onward, rather than around, the pain. If we try to move around it, avoiding it, suppressing it, telling ourselves we shouldn't be allowing it - then it doesn't go away, it festers.

I know that many do not want to post anything that is not upbeat, for fear of bringing others down. But speaking only for myself - there is nothing that brings me down faster, if I'm not feeling perky, than reading how wonderfully perky someone else is. Does that make sense? I'm glad that things are going well of course, for that person. But if I feel like I'm the only one who is on a downbeat, it only sends me lower.

Thank you, Mary Jo, for starting this discussion, and thank you, Brenda for chiming in. Keep talking and keep describing. And also, be patient with your body. Think how many times in life you've felt crummy but told yourself that it wasn't "real" - that it was all in your head. And then remember when you finally did feel better - how clear it was to you that you'd been physically not well. We play such mind games with ourselves.

I believe that if we honor our sadness/fatigue/fear by allowing ourselves to go there, we find that it's not as bad a place to be as we thought. I believe that we emerge more grounded, with more appreciation for this life that we're in.

But as I said in the beginning - the trickiest part is knowing if we're stuck in the doldrums. I've never gotten stuck myself, but I've talked to others who have and they report that they sunk so low that they had no strength nor even desire to move forward. That's okay for a day or even a week, but not for much longer, unless we note movement forward even if not yet upward. I guess that we could warn our loved ones - most of us have people around us. Tell them that we're feeling down and that if we don't seem better in a week, push us to get help? That sounds pretty safe - sort of a safety net or air gauge as we allow descent?

Debbie Laxague

[Joan M]

Mary Jo,

If it would make you feel better you should arrange for a brain MRI.

In my own case, I didn't have one until the bc spread to my lung last year. As you know, the first MRI was okay, but the second one this September showed a met in my left frontal lobe.

The brain surgeon said she heard I found my own brain met (pretty funny!). That is, I didn't have any symptoms because the met was first discovered on the MRI.

I've also been feeling down lately, and I think it's like a post-traumatic stress. I had to move so quickly to have the brain surgery that I really didn't get much time to think about it. It's like I just jumped into action to get done what I needed to do.

Your headaches are probably from sinus problems. My brother whose prone to that has been having a lot of bad headaches lately, and even his radar went up because of my brain met. He'd also been flying a lot lately and that added to it. He's been taking some nasal stuff and said he's feeling better.

It's really normal to have ups and downs. Cancer is a challenge.

Joan

[Mary Jo]

Thank you Joan.....yes, cancer is a challenge. A huge one but a challenge we can win and do better at than the cancer does to us. We can't let it, you know!!! Although the cancer woes don't hit me as often as they use too, they still hit me (naturally) and it's something we all have to learn to live with.

After reading your post I remember someone saying to me once that brain mets don't usually occur until after the breast cancer spreads to other parts of the body i.e. lung, bone, liver etc.

Well anyway Joan, thanks for posting here. All of your opinions - experiences and love help each of us. I pray you come out of your down time soon.

Love you...

Mary Jo

[kcherub]

Mary Jo,

I am with you, girl! I just finally got over the nasty sinus infection that I battled for weeks and weeks (well, almost the whole month of November) and it about drove me crazy.

I am the world's worst of thinking that everything is a met of some sort, but I think that's "okay". It's not fun, and it's not always rational, but it is my new normal (as we all say).

I will be sending out huge cyber-hugs for you. Sometimes it makes me feel better even if someone who has no idea about anything tells me that it will all work out. So, it's not brain mets.

Much love,

[Yorkiegirl]

Mary Jo, just want you to know I'm thinking about you.

I had some of the same issues you are having and mine did turn out to be sinus related. I even had the pain at the back of the skull as well. Some of that had to do with teh way I was sleeping cause I was coughing so much with my sinus issues and couldn't get comfortable so I seemed to check my head in an akward position which didn't help matters at all.

I will keep watching for your update after your Dec 18th appt.

[harrie]

Well MJ...thats what we are all here for...so you just go ahead and vent all you like. I think we all get in those moods every so often.
It would be reasonable to assume those headaches are all sinus related. It will be good when you get that final confirmation either with the sinuses clearing up and the headaches diminish or via MRI.
In any case, hang in there and if we can lend a shoulder or a punching bag for you, we will!!

[Believe51]

This is the third time writing this post so sorry for the untimely delay. While reading this post I felt like jumping on a plane just to give you a hug. Yes, Marejo, this is not your normal disposition but it is so understandable when we are dealing with this disease. No amount of positive thinking nor praying can exile us from these feelings. Our lives have changed forever but thankfully we have this home to come to. We understand like no one else can, so vent away.

You are so supportive and loving to us all at Her2. I am so thankful and honored that you looked to us to vent your feelings, your honesty is pure and heartfelt. It also pleases me to hear that you are feeling better than yesterday.

Reading all these beautiful posts from your friends whom love you pretty much has you covered. Thank you Marejo for letting us coddle you for a change. I am wrapping you tightly in my arms right now since I cannot jump on that plane. I am rubbing your temples and whispering in your ears as we speak. Can you hear me?

You are always in those prayers and a large part of Ed and my daily life. We love you as does this family. Tonight I will light a candle especially for you, how does 'Christmas Eve' from Yankee Candle sound?? It is one of my favorites!!

Lots of love and prayers today and always. I love you!>>Believe51

[janieR]

Marejo

Sending you a hug from where I live in England. I just needed to say that as I think you deserve it.

I get down sometimes like everyone here and it is great to have this lovely place to come and share emotions.

Hope everything goes very very well for you

Love
Janie

[Catherine]

Mary Jo, Thinking good thoughts for you. Once again I am reminded how lucky we are to have each other. I still thank Tricia K in Ireland for directing me to this site 18 months ago. Even though I do not check in as often as I used to, I still tell my local friends about my Her2 friends. You are all an important part of my life. Mary Jo, we are with you and hope this is really just a sinus thing. In the meantime, hang in there. I can be a worry wort, and I know how hard it is to turn off that pest in your brain. So I wish you peace and sleep over the next 2 weeks.

Hugs, Catherine

[WomanofSteel]

Mary Jo, I myself am also a very positive and upbeat person, but once in a while even the woman of steel gets the blues. I think we wouldn't be human if we didn't. Hang in there kiddo!