Will this ever stop?

Anonymous

I have spent the last 3 or 4 nights crying my eyes out and not sleeping.I have been thru hell and back over the last 2 years, haven't we all. I have had 9 surgeries, plus the chemo and biopsies etc. I coudln't even have a "normal mast", some how during the surgery, my left elbow was broken and my right rotator cuff torn. (yep required more surgery). Then 2 infections, two more surgeries, then the wrong implants, more surgery - nine and STIL counting, as I need at least one more.

Then, my PET/CT scans showed leisions, (kidney, thyroid, mastoid, sinus and behind the eye), activity in the spine and hip and mini-strokes. I have been given 6 referrals. I saw my first, last week, an eye specialist who thinks my BC may just spread to my eye. She has set me up to see her partner for a posible eye BIOPSY. 

I saw a dermologist yesterday, not even knowing why my PCP gave me this referral.  When I got there I was informed my PCP had a concern. MORE BIOPSIES. She removed three areas of interest/concern. One on my ankle  (looks like Melenoma), then another one above my kee, and a thrid on my eyelid, which turned out to be more than she thought. Right before she started to remove this one, she reviewed my electronic file and explained how the BIOPSY of my eye would be performed. Oh My Gosh, I just dont think I can do it.

Tomorrow, I have another appointment, with my cardiologist. I also will be having a polydipsea test - needs to be done in the hospital. Right now I am on 4 blood pressure pills a day and a lot of painkillers. The pain in my spine and hip have gone from nothing 3 weeks ago to the worst pain I have experience since this nightmare started.

Have any of you just reached the point where you want to say "no more"? I told my dh I cannot go thru any more of this, I am about to give up and just let nature take it's course.

jeanbean

Lady4law--my heart aches for you; you truly have been to hell and back several times over. PLEASE, PLEASE, DON'T GIVE UP!!! You WILL get through this! Lean on all of us here; we are here for you.

Deirdre1

Oh Jean I'm so sorry!!  This stuff is "hell" and I totally understand your wanting to "let nature takes it's course" and please know that it is an option but I hear a strong voice in you, strong words so are you sure that is what you want now - knowing it is an option should give you a sort of way out for now.. you can walk away from treatment anytime! 

Do you have a faith?  If you do it's time to allow it to help you - not that it will turn this around but it can help you get some peace while you are going through this.. Also let your doc know how low you are, there may be a way to bring you up and yes that might mean more meds but hey if that can help why not!  So if you identify pain then it doesn't matter how much pain meds you are on you are not on enough.. let your doc know that too!  Bone pain is catagorized as one of the worst pains to experience!   It's really good you have someone to talk (your DH) but please make sure you tell your doc's how awful this is and how much pain you are in.  This is a marathon and you need whatever meds can help you get through it..  I'm so sorry you have been through so much!!!  And as jeanbean said "lean on us here" if that helps!  Please keep talking!!! <warm but gentle hugs>

Deirdre

Emily2008

Jean, I'm so very sorry for what you've had to go through and for what you're now facing.  All I can say is that it really, really sucks, and I wish you could be spared every bit of it.

I just want you to NOT give up!  In the most hopeless times, if we can just stick out a little bit longer, we find that we CAN handle the things we thought we couldn't bear.  I agree with Deirdre--get more/better meds to help the bone pain.  And take it one day at a time, one doctor at a time, one procedure at a time.  I've had 4 surgeries this past year, and though that's less than you, it's still been an uphill fight for me to stay focused.  I lean on God for my strength, and I pray you're able to find the strength to fight this.  

We're in your corner, girl!

LRM216

Jean - I can well understand how you are beginning to even think of letting "nature take its course."  My God, it seems inhumane that you should be going through all of this - we don't allow our pets to suffer in this way.  I hate this freaking disease.  No matter what stage we are at, it manages to bring us to our knees. We wipe ourselves off, get back up, and continue to wrestle with the beast.  It is at these times we most need to rely on our faith, in God, our doctors, and especially in ourselves.  Easier said than done.  Each of us has learned that we are stronger than we ever imagined, and collectively, our strength will hold you up through this horrid ordeal. Please know that we are here for you.  

Linda

Gitane

Jean, You have been through so much, my heart aches reading your post.  Nothing in my experience comes close to the magnitude of hurt and helplessness we feel when dealing with this disease.  If you are like me you feel alone in this, even with people who love us nearby. I could not say it better than Linda. Come here and talk whenever you need to.  

Anonymous

Thank you ALL for your support and pep talks. I hope this depression is only from the pain meds.

Deirdre -    Yes, I am very religious. I pray a lot, even when driving the car and until today, was a  Catholic school teacher. Yesterday was our last day of school. Today we only needed to clean our classroom (7:30) and attend an 8:30 Mass. I was only informed of this Mass 2 days ago and I had a 9:40 Dr's appointment, which after waiting weeks to get, was not going to cancel.

This has been addition stress for me. I was hired in December and both, the Principal and the Director, knew I was "hopefully" a BC survivor. However this meant numerious Dr's, lab work and CT/PET appts. They agreed.

Then came my first Onc appt in Feb, the DIrector blew up and told me I had better not plan on any more of these "during school hours" and not without a long notice. She had at least a week or two notice for this appt. The followiong day, I informed her of my next 2 appts, on May 14th (3 months) Well at 3:00 on the day of that appt, she "forbid" me to leave! (appt - 3:45). I might add that school is out at 3:00 but she demanded I say and watch the kids for after school care.

I turned, walked out of the room, and  right into the Principal's office. Informed her, if I was not allowed to see my Onc - I would sue. I then requested a special meeting between the 3 of us, to iron out these issues. Got the meeting, but got no where. as she continued to stop me from receiving medical care. This even included following an attack by one of the students. (He slugged me in my chest, right into both my pacemaker and inplants! I finally saw the cardio today, about 6 weeks after the occurance. The appt I was once again told interferred with a work assignment, my command performance at Mass.

After I had my PET/CT scan, violating the Directors orders, my Dr ordered all the referrals. I knew I'd never be able to see those doctors until after the semester had concluded. I almost had to cancel today's because I was not informed of the "Command performace" until 2 days ago. 

I think I got the Director in trouble, as she decided to let me and my co-teacher go, claiming lack of enrollment.  I went right up to the Principal again and informed her of a lot of legal issues the school might be having with regards to this person and God forbid, I don't die as a result of her actions.

I believe you, bone pain realy has to be the worse kind of pain. I recall after the Nuelasta shots, the pain go tprogressively worse, finally after my 4th treatment, I wound up in the ER. My Onc said NO MORE. I thought that was the worse pian - ever. I am now having terrible pain again, almost as bad as the Nuelastia.

I have been on the Vicodin for about a week, but the pain is only getting worse, I just wonder how bad it would be without the pain meds. I've  spoken to another BC survivor who had mets to the bones and underwent rads. She said after about 10 treaments, the pain started to leave. Her concern was the mets to her liver. Thank the Lord, she is now NED....3 years later. Her Onc gave her only a 5% chance and she told him - she would be in that 5%. 

The only good thing about the Vicodin, it has lowered my BP. I have been on over a dozen BO meds and nothing has worked, now a combination of BP meds AND the VIcodin, my BP is 130/80. As soon as I get off the Vicodin I am sure my BP will spike again. 

One more scary thing, my Cardiologist said as I was leaving, guess you won't need to see me again, but you can make an appt for one year, then shook my hand and said he'd miss me as I was a very nice patient. Gee what did he mean by that? At this point I am wondering - does he think I am going to be dead by next year?

LRM216

THIS IS A CATHOLIC SCHOOL????  My God, what kind of Christians are these people, certainly like none I know.  With all the medical problems you are having, you have to go through this as well?  By all things holy, I would certainly sue (not like you have the time and leisure to do so), but I'd definitely consider it as what they are doing to you is totally illegal.  As for your cardiologist - I don't even know what he meant by all his mumbo jumbo, but I would definitely be looking for another cardiologist. Keep that head up and keep marching on (and call an attorney).

Hugs,

Linda

Deirdre1

I agree such compassion!!!  I know that there can be a "bad apple" in any place but this seem incredible!!!

I do believe the cardiologist meant that your heart issue might not need his help on a regular basis any more - but then you would think that he might THINK before he opens his mouth!!!

Anonymous

Deirdre & Linda

I asm thinking of suing, actually moving on it. I have not only given the Director a number of chances to apologize and correct her "error" but also spoke with the Principal, who was going to correct or look into a number of my complaints, but ----nothing. 

As for the cardiologist:  My cholestral has been high for 2 years, (he ordered LIpator last year and I had it tested last month. My BP might have "appearred" normal today (130/80) but I am on FOUR BP pills a day plus 4 pain pills,  And my EKG might have looked perfect but I have a pacemaker. I am required to have it check every 3 months. It takes only a few minutes to run a printout that shows any abnormalities that may have occured over the last three months.

He did not check the area on my chest where the PM wires are connected. The area where one of my students hit me and I have been having a lot of pain.(I teach 5 year-olds).They not hurt and feel like they are about to break thru the skin. Thank God I still have the other cardio. I will be seeing her in a month. 

Anonymous

      I was totally amazed when I read all that you have to deal with and once again found myself thinking that I have been so lucky.  I would most certainly do something about the way you were treated at school.  You do have rights and they have been violated.   There was another woman who posted on these boards about how her boss was being such an ass about her taking time off and I think things worked out for her.  She got help from HR at her work and I think things actually worked out in her favor.  Definitely follow up on this and do not let the director get away with treating you as she did.  I just can't figure people out.........doesn't she ever stop and think it could be her dealing with cancer?...obviously not.  She sounds evil.

     I can relate to the bone pain.  Before I was diagnosed as having mets in my sternum I would have terrible pain....it felt like an ice pick chipping away into the bone, a continuous pounding.  I could time it like contractions and when it got to the point where there was no let up at all, I told my onco (I am no longer with that one) she had to do something and she ordered the bone scan which showed that the upper and midsection of my sternum were full of cancer. 

    In addition to bone pain you have so many other things going on and I just cannot imagine what you are going through, but have the utmost respect for you for continuing to work during this nightmare.and agree with the others who told you not to give up.   

Anonymous

Marybe

I did speak with the HR person. I work (ed) for a Catholic School and their HR is located at the archdiocese office, not at our school. I don't think anyone at our school knows who he is except for the Principal and the DIrector. When I spoke with the HR I only mentioned her not wanting to teach religion (Why else would some one place their child into a religious school?) and not being able to see my doctors with out a big fight which generally lead to my having to cancel my appointment or not make one in the first place. I forgot to mention - never having a correct paycheck, I think I have been shorted in every single pay period.

The pain is getting much worse - not only by the day, but by the hour. I just don't know what I am going to do. I was giving the RX for Vicodin I think 8 days ago. I took only 1/2 before I went to bed, the first couple days, then one in the morning and one at ngiht, yesterday I took 4 1/2's (2 pills) during the day. Today I switched to a whole pill, about 3 hours ago, and the pain is worse that it was a week ago - without anything.

What is very scary, to me is, my original tumor was about the size of a golf ball and came from no where. It was located right under where our bra sits, an area that I could feel anytime I took a shower, without performing a breast examine. My PCP had never seen such a fast growing cancer. My pervious mamo, showed nothing, so it grew from nothing to golf ball size within months.

I had my PET/CT just weeks ago and it showed "activity" in my spine and hip. I was having only slight pain at that time. Now, again within weeks, I am in massive pain. My  PCP spoke with me a week ago Friday, gave me the new pain RX and said she would be on vacation for a week. If the pain was still there when she came back, she wanted to see me and order xrays and I thinking, another PET or CT - maybe both. I am thinking I'll send her an email so she'll have it soon as she checks her emails.

Marybe - you have pretty much discrible the pain, like an ICE PICK. I can hardly walk. The strange thing, the pain first started in my spine but now my hip is now hurting far more than my spine. 

Deirdre1

Jean,  your PCP wouldn't go away without having another doc take over the practice.. don't wait until you are out of the Vicodin call no and ask for a refill - if he/she wants you to go to the emergency room do that.. but you need relief and pain is something that pulls us away from our "solving" mind - please call now so you will have the medication you need even if your doc is out of town.  You will have to jump through hoops with a substitue doc but that's better than experiencing bone pain..  Good luck and I'll be think about you!  Remember pain is now something hospitals HAVE to address and you may need to be your own advocate, but if I remember correctly you either studied law or are a lawyer right -  you can do this..!!  Best

Nanalinda

Next time you see your Dr. ask for a Duragesic Patch to go along with your other pain meds.  The patch gives you a continuous release of medication without making you too "loopy".  I have mets to spine and know how much pain you are in.  Once I started the patch, I have had many good days without pain.  They usually prescribe another medication for breakthrough pain (mine is Percocet).  You should not be living in all this pain.  Good luck and hope you are feeling better soon.  Linda

Deirdre1

Jean:  Please go to this part of the site and read it will help you understand that pain meds are a part of your treatment..

http://www.breastcancer.org/tips/pain/

Best

Anonymous

Jean, so very, very sorry for the pain you have.  For the emotional pain from school I hope you have researched the Family Medical Leave Act (FMLA) which will allow you time off from work intermittently and also the American with Disabilities Act (ADA) which maybe you can use if you do decide to go ahead with the lawsuit (and you should).  Perhaps the threat alone will get them to change their attitude.  You have enough to deal with without having to worry about making your necessary medical appointments. 

My prayers are with you during this trying time. 

Anonymous

Deirdre - Gave up the legal field after the BC, and switched to teaching in January. I have enough pain meds to get me through to Monday. I only took 1/2 a pill the first 2 days, then one pill (broke in 1/2) 2x a day for the next 2 or 3 days. I have NEVER taken pain meds through out all the surgeries as they all made me want to vomit. The pain seemed to be the lesser of two evils. Thsi time the pain is so bad, I have given in. After 4 days I started taken 1/2 a pill 3 - 4 times a day.....today Its been whole pills 4-5 hours apart - still no relief, or very little. I wonder how bad it would be without the pain meds.  And Monday - I am suppose to have 2 crowns - and been told they may turn into root cannals. I'd liek to put them off, but I think my dental ins may end with the end of the month.

Deirdre1

Jean:  There are many different kinds of pain meds these days and, like you, I didn't even take asprin before my car accident - but I've learned that if we need it we have to take it.. my God girl you have cancer!  If that isn't a good enough reason to allow your mind to accept taking pain meds well then there just isn't a reason for them at all - and we both know that's wrong..  On the trip to the dentist on monday that's more of a reason to get better pain relief, but I do see your point about running out of dental insurance.. Everything we do with medicine costs sooo much!!!    Ok then you are good for the weekend right?  But you probably became an attorney for just this time in your life - don't let anyone put you off if you need something - use those skills   Hang in there and you are in my thoughts and prayers..

Best

Anonymous

   Jean,  I am so sorry you have to deal with so much at one time.....the horrible way they treated you at work, dental treatment that needs to be done and most of all bone pain.  I remember how bad it was which is why I could describe how it felt......lots of time I forget what pain felt like once it is gone, but I remember that.  Maybe your hip hurts because of the way you are walking due to your back pain.  Does ice or heat help at all?  You will be in my prayers.   Marybe

Anonymous

Thanks Marybe I am going to get a bag of ice and lay down.

Late last night I noticed my hand.I showed it to my son and he deduced it looked like I just had a bad IV removed. Along with a bruise, which coverd most of my hand, is a bunch of dark spots.  What Hell is going on?. I tried to add a photo, but it didn't work.

lisahugs1

Hi Jean

 I am in a similar boat,,but refuse to give up.  I had breast cancer in July.30 o8.   Went thru chemo, double masectomy, third degree burns from rads, and then had lymphedema (sooo painful).  ALL a week after my first baby was born.   Then 9 months later started headaches,,,went in and found 3 brain tumors (HUGE).  All this while my husband decided to relapse on me   Anyways, rushed into surgery puking for days (tumor on cerebellum) and had then removed.  I had Gamma knife rads to the 4 spots (one more tumor discovered later after having a more intence scan).   Then 6 days ago found out that I have MRSA infection in my head,,,had to go AGAIN for emergengy surgery (took out the bone and cleaned it out,,,am on 6 weeks IV anti-biotics at home now.  I have a hole in my head that was removed to clean out that infection.  Looks like I have been hit hard with baseball bat.  Now I am doing good. WAITING to hear whats the outcome of the very hightech rads I had,,,and fighting off docs because I will not have whole brain rads. 

My husband I left in Michigan to get his own crap together,,and I am now living with my baby (10 months) with my mom,,her b-friend.  Its a huge house,,and everyone is great. My close family is here now.., and I am pushing.

For me,,I have Jesus,,and know its all going to be ok. Fear tries to creap in. I have been thru hell literally  and know its ALL for a reason.    I plan on having my new boobs on Aug.11,,,but will have to see what happens as usual.

I would say,,,that thru all of this I have learned that its Gods way,,not mine. I am 31 and have this strength in me,,that has not been from me.  I am not doing this on my own,,,and God is carrying me right now.   I have alot to live for,,and my baby is definately one major reason

Please don't loose hope. Dive in and change some things a bit.  One day at a time isn't always easy.  BUt sometimes we can only do one crawl at a time.   Don't let the enemy win. You are in a battle right now,,and your victory shall not come unless you fight for it. 

RITZGAL

Call the doc about the bruise and dark spots on your hand honey.  I know we think we are a pest sometimes, but believe me, your doc would rather you call.  Also, I don't know who has you insured, but Blue Cross Blue shield has nurses you can cal 24/7 if you don't want to bother your doc.  Call your insurance co and ask if they have this service.  But for now, call your doc about those spots.  I pray your pain goes away.

Anonymous

LIsa _ I am going to try this again. FOr some reason I have lost my connecfion three times.

Thank you for your input, I am going to send you a PM, as I want more information on what you have been going thru. I am so scared, as I know you must have been and still are. It's made worse when our husbands refused ro become involved with our BC, surgeries or treatment. (MIne actually said I brought it on for attention! Needless to say, that broke my heart. This nightmare is bad enough to go thru but when your husband forgets the phrase, ""in sickness and in health",what can we do?

Darn, I just lost 1/2 of this message. Just the way the day is going.

I had 3 biopsies on Wed, one looked like a melonoma, looks like another,  on my eye, this week. All this "unknown" is driving me crazy.I also have to see an neurologis. It is suppose to be an ER appt, but is taking 3 weeks to get in. I am not sure if that's for the min-strokes, numbness, or the "areas" in my brain scan, Then there was my cardiologist, who's comments sounded like he was saying a final "good-bye" to me.

You are so blessed. You have your baby, a reason to live, and your mom. I lost my mom to BC. (also my paternal GM, who I never met - she died in her 20's of BC). I have almost no family. My mom, dad, daughter and brother, only sibling are all dead. I do have one son, who with his wife lives with me, but he's been fighting cacner also for the last 4 years. (Hodgkins Lymphoma)

I am very religious, and feel terrible about many not making it to church today. But I am on so much pain meds, I dont want to drive, and just don't know how I could spend a lot of time on my knees.

You will be in my prayers, (look for my PM), Jean

Nanalinda

Jean and Lisa:  My heart goes out to both of you.  You certainly both have quite a fight on your hands.  All I can do is send you both warm hugs and tell you that I will be thinking of you and I hope things improve for both of you.  Linda

Anonymous

I give up. Today, while at the dentist,  having a crown done, my Onc called and left me a very nasty message. Evidently my cardio (saw him Fri) called him and now the Onc was upset. WHY? Because I've seen some specialists. He was almost yelling at me. Apparently he thought I told my Cardiologist - I might have mets to me eyes. 
  
I said hardly a word to my cardio. He spent most of the time I was in his office - reading my electronic file and acting strange. There was a number of entries besides the PET/CT results. 

 First my demotologist, who removed 3 "things" and sent them to be biopsied, had entered something. Then, the Eye Specialist - who TOLD ME - she feared BC had spread to my eye and scheduled a biopsy of my eye for Wed.

Well, my Onc was mad. He said there was NOTHING wrong. I should not have listened to THEM but only him. At this point (remember I just had left the dentist with a numb mouth and could really speak), I was getting mad. I told him - okay then there's no need for me to go through all the pain, and danger, of the biopsy. I'll cancel it.  

He suddenly decided I should have the biopsy. WHY? I am blind in my right eye, what if something goes wrong with the biopsy? I could be totally blind. Next, I hear the pain in my spine and hip is arthritis. WHAT? How on earth can that be? There was nothing in my last CT/PET, 5 months ago. Now, it comes on - in ONE DAY, and gets worse and worse with every day? I have never had an sign of it before. In a little over a week I have gone from 1/2 a Vicoden at night, to every 4 hours, and the pain just continues to get worse. Something's wrong and it's NOT arthritis. Did he even think - gee - maybe a slipped or herniated disc, if not mets?  

Honestly - I just can not continue with this crap - I guess I'll just cancel the biopsy.