Enduring

barbe1958

Swimangel, I am leery of anaesthetic too as I'm afraid my body won't wake up. I just had surgery again yesterday and wondered when I'll finally give up.

I feel like I'm waiting too, but the waiting for me is wondering if and when I am going to die of this cancer. I have two kids getting married this year and wonder also, if waiting for grandchildren is one of the things helping push me through all this.

Capturing a special moment during the day, what I call my "Oh God Moment" is one of the things I try to do each day as well. The sun you caught today on your flowers is what I mean. I actually get very pleased when I get my "moment" knowing that I can still see the blessing in it all.

This has been how I've truly learned to live in the moment. 

swimangel72

Hugs to you Barbe - I hope each day you find many  more "Oh God Moments"! Today - it's looking at my old cat Skippy (he's 14) and how he LOVES to sit on my computer desk, just basking in my company! He's orange and white with the most beautiful greenish-gold eyes!

barbe1958

"Basking in my company", oh that is exactly what they do! I have 3 now and love them all dearly. Last night they all gathered on the sofa by me on one side and my DH was on the other side with nobody! They knew I needed them.... 

mmm5

Swimangel-

I read through all of this thread today, and as always am struck by your posts!

You reflect as a very articulate, intelligent, and aware woman. These traits are a gift and sometimes a hinderence! You really can identify with the good and are so descriptive with that but you also then can identify with the bad and this is just bad stuff! (breast cancer and all of its pleasures LOL) I know that if you keep exploring the journey fully you will process the bad and move on, keep posting, keep noticing and sit back and lean into all of your experiences that will take some of the fear out! I know because I can relate to exactly what you are saying and struggle daily! I see a therapist, come here, read, and meditate! Some days are just SH##* and others better! (I truly we believe we are in AI war zone and we need to find ways to deal with that the most as I have experimented with a time off and the AI's are very very hard on me! Just went back on!)

I know you will do well, I can feel it in the expression that comes through your post!

swimangel72

Thanks so much for your kind and supportive words mmm5! The Arimidex is kicking butt for sure - even the bones in my FEET hurt - but I try to remember that my cousin when through this and came out the other side in one piece. She's a ten-year survivor - and when she was finished with her 5 year tx with Tamoxifen, she went on a cruise with her girl-friends! Now she's a "cruise-queen" - so when I'm finally ready, she'll help me make my plans. My cousin is an amazing woman - she's a labor and delivery nurse - she works hard all day - on her feet. When she realized that her extra weight was increasing her risk of recurrence, after she finished her bc tx's - she had her stomach stapled and lost about 125 pounds! She looks gorgeous now! She walks about 5 miles a day. We were at a family reunion a couple of years ago and she walked 5 miles on the beach. I was amazed - asking her, "do your feet or hips hurt?" (because even though I didn't have BC then, and I was a smaller person than my cousin I wasn't able to even THINK about walking 1 miles let alone 5)..........and she said, "No - NOTHING hurts me! It's a miracle!" She was about 51 at that time.  So I keep that in mind while I'm going through all this with the Arimidex.............today I went to the pool and swam a half-mile. I wasn't as fast as in the past - and I had to stop to catch my breath - but it felt WONDERFUL! So like my 85 year old mother says, "use it or lose it"............she rides an exercise bike every morning while saying her rosary. I should complain less and DO more -  I have so many inspiring women in my life - including YOU and my other sisters here.

When is your last Herceptin infusion mmm5? Hope I didn't miss it - I'd like to celebrate with you!

NanaOfTen

I was so glad I found this thread. The past few weeks I have not been all that "up" and it's such a relief to learn I am not alone.

I, too, am tired of being strong. Was just saying to myself the other day that I need some JOY in my life again. I think too much ... why am I even doing this? if it weren't for science, this is my time to go home.

Six years ago I had an auto accident, lots of body injuries (whiplash - 2 bones touching my spinal cord; thigh bones pushed into my knees; right eye detached on the inside; lower spine compressed; left shoulder muscle torn in half)  and to top it all off, a head injury which made me have to give up my job I loved as I could no longer do it. I haven't been able to drive for over 5 years as I began having seizures. I have been in constant pain since the accident of May 2003. Now the chemo side effects only make it worse. My onc doc has finally found a pain med that helps wiht the pain and doesn't just make me loopy. I don't like that. The ones he gave me first only made me loopy but I was still in such hurt.  This was the year I was to get my knees fixed, my back fixed, my neck fixed. I wonder if my bones will be strong enough when I am done with tx to do all that needs to be done.

Anyway, my girlfriends slowly stopped visiting me after the accident as I was so different because of the head injury. My oldest daughter no longer speaks to me because, as she says, I am a retard and until I am like I was before, I can no longer have anything to do with her or her family (she has a husband and two sons, my grandsons).  I live alone. With not being able to drive, I am alone way too much. My younger daughter visits occassionally. We usually will go shopping once a month - my only physical visit with her. She has 4 kids, 2 from her hubby, 2 of her own, that I seldom see, usually only on holidays (and Easter I was in so much pain from my chemo, I could barely walk so my daughter said to stay home). My youngest son, who will come and help with the house sometimes, is a recovering addict and when he leaves, even tho he sees me in extreme uncomfort, 1/2 of my pain meds will be missing, so I am to where I don't want him here because it is so stressfull, having to constantly keep my meds with me at all times.

I want to start doing my art work again. I even have my paints out on my table with the easel out. Even have a canvas ready to go. It's been over a week and that's about it so far ... it's a start I tell myself.

I have not heard from my family in almost a week now. My family from when I grew up (brothers, sister, mom - unless I call them) I don't ever hear from them. I am so lonely, I keep wonderying why am I fighting this? Who would notice if I was not even here? This chemo is a challenge, still have 5 more to go. Then it will be cat/pet scans every 6 months and blood work every 3 months for forever.

I try to do as you all are ... finding something each day. But I really am having a time finding something to brighten my days. I am so glad I believe in God because if I didn't, I don't think I'd be here. I want to see him in heaven when my time does come and I don't want to mess that up.

I lose myself in TV often.

Bottom line, I'm just glad to know I am not alone in being tired of being strong,  that it's not having a "pity party" ... I'm just tired, I'm lonely, I feel I am fighting this alone with no family support. Are people really this busy in today's world?

barbe1958

Nana, you have captured something of what I have been feeling and not realizing - I am lonely! My kids are all excited with wedding plans, my family is spread across the country and my husband with his 3 brain tumours is often distant. I feel I have the whole weight of my existence on my shoulders.

I work in 100% commission sales and have found out recently that the company I work for cannot even afford to fill the orders we have all sold! That is about 30 million dollars a MONTH. Very scary, what would I do without my job and health benefits! I am just sick. I get paid on delivery of the product, if the company cannot deliver it, how will I get paid! What is going to happen to me? Sometimes I think it would be so much easier to just let go....

I feel for you so much with your constant pain. I, too, suffer pain. I was on oxycodone for 9 months, the narcotic equivalent of 25 Percocets a day! Now I am on Tridural 300, a time-released pain killer. What are you on that is working? I can handle almost anything, but I can no longer handle pain. It drives me crazy!

God bless us one and all. 

NanaOfTen

Barbe, what I am on now is oxycodone but it's not getting rid of the pain, it makes it tolerable so I'm not crying with it. Make sense? Sometimes I wonder if anything will ever ease it so I can do things. Just doing dishes my back feels like a hot poker is stabbing into it. But once I get a chemo tx, after the last one, for a week and a half of muscle pain and joints were burning. I am so glad I only have one more of Taxol then I go to AC. Taxol is really kicking my behind. Though my doc said the AC is a harder tx. ACK!!!

My doc wanted to put me on the pain patch, can't recall the name now, but I am allergic to bandaide sticky stuff and my neurologist tried it once. Had it on for one day and the allergic reaction was too bad had to stop. Fetynol? think that's the name of it.

Yes, God Bless and Be With us All

barbe1958

Nana, I know what you mean about the drug. You are still in pain but don't care! hehehehehe

That will stop me from getting the fentynol when I need it...sigh. I have kind of kept that as an ace up my sleeve. I bleed with surgical tape! What about a pain pump like LuhAnn has? 

NanaOfTen

Funny you mention a pump. While watching TV tonight, I was thinking I wish I had my morphine pump back. QQ Wonder if they give those for home use????

barbe1958

There is something they insert with surgery and it gets filled....I don't know, but it sounded awfully good.... 

leaf

You may want to consider seeing a Pain/palliative care physician. 

The pain patch is Fentanyl.  If you have an allergic reaction to the adhesive - assuming its a mild reaction -, then I'm not sure what you could do besides continuously take Benadryl or another antihistamine (which may or may not work).

If your pain is nerve related  (and it sounds like it very well could be), then the pain medications that were suggested for my terminally ill friend  ( a nurse with pancreatic cancer) were methadone, gabapentin (Neurontin), pregabalin (Lyrica), amitriptyline, and perhaps Darvocette.  She was not getting any pain relief from high doses of morphine, oxycodone (including Oxycontin), etc.  Imagine my shock when she admitted her pain score had been >7 for over 3 months! 

When they switched her to methadone, the methadone controlled her pain. (They also put her on low doses of amitriptyline (Elavil), and Gabapentin.  She was able to drive when she was on it.  Methadone held her through her entire course; when she became unable to swallow pills, they used methadone liquid and squirted it in her mouth near her cheek. (She wanted care at home.) It controlled her pain until she died. She actually decreased her need for pain meds over the next 8 months, I imagine because she didn't metabolize the methadone as well as her cancer spread to her liver.

I know that methadone has a stigma because its used for heroin abusers.  But I can tell you I am so glad my friend got it- she got pain relief!  I know everyone is different.

The palliative care doc is continuously putting people in the hospital with chronic pain on methadone.  Methadone is a lot cheaper than Oxycodone (or Oxycontin) or the extended release morphine preparations too.  It would certainly be cheaper than the care you would need to maintain a pain pump. The drug reps for Oxycodone, etc keep on saying methadone increases the QT interval, but the palliative care doc has not seen that.  We now give TONS more methadone out to floors than before this palliative care doc got involved.  

(I'm a hospital pharmacist.)

Of course, your doctor has to make the assessment, and make the decisions.  

barbe1958

Wow, never would have considered that leaf.  Barrie even has methadone clinics! (But they are for heroin users of course.) Nice to know I will have a new ace up my sleeve as I stumble down this road....

I have a horrid reaction to tape - the incision I just had on Tuesday opened up at one yesterday at work. I even bleed under electrodes for heart monitors....I still have scars from the tape from my mast in December. The doctor was stunned as he swore I wouldn't be allergic to HIS tape. (They all say that!)

NanaOfTen

Barbe, that is just what my skin does, the tape eats it! and true, no one wants to believe you then they see the results. When I had my surgery, tho, my docs did listen and didn't use any tape. They bound me with the dressings under it so no tape would be needed. Was tight, but nice not to have to worry about my skin becomning raw.

mmm5

Swimangel-

So glad you got in the pool!!

Keep going I walked 3 miles twice yesterday, it just really helps and I am determined to get on with things like your cousin. I stretch after the walking and it really helps! My last Herceptin is in 3 weeks will post about it then so we can Celebrate. Next week is my one year anniversary since DX! You are going to do great I just feel it, you really don't come across as complaining at all you come across as someone really being honest, open, and just real about the entire process! That is real healing if you ask me! I think we try to be hard on ourselves and expect a lot of ourselves but the moment we give in and say wow this sucks and it is a bad thing we feel those feelings really feel them then process and move on. It might be horrible again in 3 days but we may have less and less of that as we feel it and release it. I may be way out to lunch, but I too am just trying to muster through this all!

Be Well - Peace and Prayers Michelle!

leaf

You do NOT have to go to a 'methadone clinic' (i.e. for heroin users) to get methadone.  (Obviously you need a valid prescription on a special prescription form from your doctor.)

We had trouble finding a pharmacy that would reliably get my friend her methadone.  We asked the palliative care doc.  Apparently some branches of some pharmacies 'specialize' in certain things.  We had no problem getting methadone from this branch of the major pharmacy company.  It is handled just like any other narcotic, such as morphine or fentanyl patches. You give the regular pharmacy the prescription, they fill it and label it just like any other narcotic, you (or your agent) probably have to sign that you received it.

I'm sure that 80% of the methadone I dispense in the hospital is for chronic pain control, not for heroin maintenance.  So just because someone prescribes methadone for you, it doesn't mean you are a heroin addict, of course.

It is possible to convince pharmacies to special order things for you.  I just got some immediate release niacin (which is over-the-counter)  from by local pharmacy that 7 local pharmacies did not carry.  I 'special ordered' it. However, sometimes they don't want to do so.

I have had some 'tape' reactions too - but I don't think they were anywhere near as bad as yours.  Some people's skin just falls apart with the wrong adhesive.

NanaOfTen

mmm5,

I have to agree with what you just said re "That is real healing if you ask me! I think we try to be hard on ourselves and expect a lot of ourselves but the moment we give in and say wow this sucks and it is a bad thing we feel those feelings really feel them then process and move on." My thoughts I posted earlier here have been festering in my mind for days. I found this post and felt free to finally share them with my bc sisters who are having similar thoughts. Since I have, I find that I am no longer dwelling on these thoughts, and feel better. It hasn't changed the fact that my kids are being creeps   - I still haven't heard from them, they are busy with their lives - I am thinking more along the lines of just simply taking care of me, for me, to be well.

God Bless everyone with the strength they need each day

mmm5

NanaofTen-

Amen please take care of you, I too am doing a lot more of that and that includes indulging in feeling even when it isn't good and not always trying to have a "stiff upper lip" or "pull myself up by the bootstraps" I am being me and sometimes that means crying about the troubles of BC!

Be Well and God bless YOU!!

swimangel72

NanofTen - I often think how I'm a big baby complaining about my breast cancer when I've been so fortunately in other aspects of my life - and I was even thinking to myself recently, "what would a woman do who ALREADY had chronic pain due to an accident? How would she be able to cope with bc on top of that?" I talk that way to myself - kind of like a slap in the face - so I can put my life in perspective. Then suddenly - here you are Nano - like you  materialized out of my head - and my heart is broken for you - not just for your chronic pain from the car accident - not just for the beastly fight against the BC beast........but for your loneliness. I truly don't know how I'd cope if it weren't for my DH besides me. My own immediate family (brothers and sisters) are scattered around the state and we don't get together that much. We are a loving family - and I do get lovely emails now-and-then - but they really  haven't a clue what I'm going through. My older daughters are very close to me - but they are busy in college, as it should be. They are young and have their entire lives ahead of them. I'm happy when they are happy! My son is only 16 and life goes on for him in the usual way - he's very sweet and happy-go-lucky - but again he has his entire life to live. My DH is my rock - my TREE man - his roots deep and strong - he teases me all day long and laughs if I bristle, then I laugh too. If he DIDN'T tease me - I'd feel lost - I'd worry that HE is sick! I do worry about him getting sick - because I need him so much now. So Nana my heart goes out to you in your loneliness...........friends come and go in life - children are born to grow up and leave - who do we turn to when we're alone? We have each other - and God of course - but I think we ALL need someone strong to hug and hold us up when we're down, like lost and hurt children. I hope our words here comfort you and make you smile - and that you can get some good pain relief soon! And btw - I had terrible skin reactions to the tape as well - even paper tape leaves awful red marks. Now THERE's something we should all invent and market - we could get RICH!

Michelle - you don't have long to wait now! But I'm going to beat you to the finish line - my last Herceptin is on Wednesday - yay! I'll be sure to post something about it - no cake or ice-cream celebration for me though (maybe just a glass of wine?) because this time I REALLY will try to lose 25 pounds! Thanks again for your uplifting messages - you always put a big smile on my face!