Winter rads 2014-2015

WheelyGirl

Quiggy and Cyote - am thinking of you both and keeping you in my prayers.

ladyb1234

Coyote, as always well said and words of wisdom.

Quiggy, thinking of you and praying for benign results.

Have a great weekend.

quiggy

Thanks Coyote, I truly appreciate your message. You are a dear person.

Deeply saddened at what you're going through. Hoping things turn better for you.

Hard to not wander down the "why is this happening" path. I know it's of no value to allow myself to have negative thoughts. Knowing doesn't always prevail.

Pain, fear, relentless research!!!! Do you think women stressed less before the internet? Or.... is knowledge power? hmmm?

CoyoteNV

Quiggy ~ Thank you very much for your thoughts. You know, I really am quite fine.  I think that I am doing well.  Life just has issues.  Hills, valleys, smooth roads, bumpy roads... and some losses.  We may not be green, but there are times for each of us that we can relate to Kermit.  I am fortunate and truly blessed.

There are two sides to the intelligence coin. "Knowledge is Power." and "Ignorance is Bliss."  They are probably both correct sometimes.  I am also a big researcher.  Sometimes it can scare a person stupid, and it is important to realize that it can give us only part of an answer.  It can also help us ask the right questions.  Hugs to you.

kayfry

Coyote, those are some of the wisest words I've heard in awhile. And Quiggy, still keeping you in my thoughts and hoping better times ahead for you!

WndrWoman

Quiggy and Coyote I totally agree about the two-edged sword of information. The trouble is we are often really looking for a reliable fortune teller and the research only provides impersonal statistics. But I do agree that gathering information and hearing about other people's experiences help us ask better questions, understand what is going on, make choices, and be prepared as the disease and treatment continue. It can even help us evaluate the services and the medical staff that deliver them.

I have a friend who waited many years to do a lot of things she wanted to enjoy. She was waiting for Mr. Right to share those experiences. Basically, she put her life on hold. Finally she realized that he might never appear and she was missing out on a lot of life. She remains single but for several years has happily lived in the present instead of waiting for some future starting line. I see myself now playing with the waiting game, not knowing whether I can trust planning something until after my scans in August. So I try to remind myself to live each day I have. Uncertainty about the future isn't just for people with cancer. A healthy former coworker died unexpectedly in a surfing accident earlier this year. Still waiting is hard and not knowing what is ahead is hard. And dealing with all this if you have pain is harder.

Trying to go with a bit of Carpe diem attitude, even if that just means an ordinary day at home.

mqt64

Quiggy, fingers and toes crossed. It is true that no one knows what tomorrow will bring. You and Coyote and Wondrwoman are wise. Knowledge is a 2 edged sword and living in the present is the key to serenity . I think I get discouraged when I can't even begin to worry about the next bout because this one never ended. I can't imagine having another bout starting ever, much less when this one never ended. I am not assuming that your biopsy is positive, I am talking about all the fear and uncertainty. You are in my thoughts every day. You will find the strength you need. Hang in there!

I would just like to take a minute to ask for prayers and good thoughts for my nephew, Danny, who will have his last round of chemo this week prior to his stem cell transplant next week for Hodgkin's lymphoma. This is a recurrence so this is kind of a last ditch effort at a cure. Thanks. We are a powerful sisterhood!

WndrWoman

mqt64. Will be thinking of you and your nephew this week. Hope the procedure goes smoothly for him. And wishing

CoyoteNV

mqt64 ~ My prayers for Danny's strength and recovery  - as well as for you as you have gone through so much over the last year. 

quiggy

Thanks mqt64, we are a powerful sisterhood and lots of healing and support between us.

I'll keep you, Danny and your family in my heart and thoughts. Hoping Danny's chemo is easy but effective and lays the path to a recovery.

Love and hugs to all our sisters.

ladyb1234

mqt64. Prayers for Danny specifically that the chemo is effective and for his strength as he recovers. Prayers for you too! We are a powerful sisterhood.

quiggy

Hi all, I'm struggling. Trying to keep positive and strong but I'm falling apart. Every day I have pain from the breast and my abdomen. I feel nausea, dizziness and fatigue.

My MO has been on personal leave for 5 months now so no help there. BS is focused on the boob, cutting out the mass. I told him I am feeling sick and he literally patted my hand and said we need to get you better.

I called my MOs office today, they suggested I see a pcp because "they only handle cancer."

I've never met my pcp (I have Kaiser Permanente). HMO circle of hell.

Am I causing sick feelings because of stress? I find myself quietly crying myself to sleep, crying in the shower and whenever I'm alone.

No one to talk to because I try to keep my hysteria from hubby and friends. Doctors tend to be dismissive and judgmental so I'm hesitant to reach out.

I'm feeling really lost and hopeless. I've tried so hard to not go "there" but, no luck. I hoped trying to ignore and repress the fear and physical feelings would get me through but...

zjrosenthal

Quiggy, of course you are stressed with all you've been through. Who is covering for your MO? Do you have any antianxiety meds? Ativan has helped me a lot. Please see your pcp if that's all that's available. Praying for you right now. Love, Jean

WndrWoman

quiggy My heart is breaking for you. I am sorry you are suffering so much. You definitely need someone you can talk to - both medical and a caring person. Do you have one friend or family member you can unload on? Someone you can tell about your fears and difficulties? Also, does your MO have a nurse practitioner you could see? Is there a local breast cancer organization that provides counseling or mentors?

Are there any calming activities you could do during this endless wait? Walks outside in a natural setting, handiwork like knitting, jigsaw puzzles (I did 6 during radiation), meditation or prayer. Young children have a way of lifting spirits.

There is little we can do to stop your pain. Hopefully you may discover ways to bring your stress level down but don't try to deal with this alone. Keep talking to us here because we care about you.

CoyoteNV

Oh dear. Quiggy. I'm so glad that you see that crying in the shower and in bed every night is not good for you; however, I would be rather surprised if you weren't anxious - and afraid.  The physical symptoms definitely need checked out right away. make an appointment with your Primary.  (I adore mine -maybe you will be lucky too) You have an area of infection - right?  Those kind of things can cause other issues - more systemically.  Approach it that way.  I do think you should discuss this with your husband.  Try to stay calm when you talk to him, but do tell him that you are having a difficult time dealing with it all emotionally as well as physically.   Good advice from WW  about getting counseling and support from a local cancer support group.  There is one through the cancer center where I receive my care. 
Hugs to you.

mqt64

Oh Quiggy, my heart breaks for you. I empathize with that feeling of isolation and what feels like tears at the drop of a hat. I too think you should see a provider for the abdominal stuff. There are so many things that can cause that that are benign and simple to treat. It could be stress, all the antibiotics you have been taking, or gastritis caused by either. A good probiotic such as Florstor or Culturelle can help a lot. I'm taking Florstor with mine and it seems to have stopped the diarrhea and nausea I always get with antibiotics. I'm not sure if your mo's office could refer you to a psychologist that takes care of women dealing with breast cancer. I was offered that earlier. Talking to a caring person who also has some detatchment can help. I've seen one in the past and she literally saved my life. It is a good way to share the load without feeling like you are burdening loved ones and then still be able to share with them. Wondrwoman had great stress relieving ideas. Know that this is not forever. Hang in there! Gentle hugs. Marge

WheelyGirl

Quiggy -I am so sorry you are having this added stress. Please follow Coyotes advise about seeing your primary it may help with your worrying. I also agree that you should talk to your dh he may be able to help with the worry part as well. Thinking of you.

mqt64

Well, the verdict is in. One more week of hyperbaric and then surgery.I have wonderful options. (A little sarcasm). Minimally they open it up,remove the tract and debride the current area and remove as much necrotic tissue as he can remove taking only part of the upper areola. The other is to do all of the abovementioned but end up removing the nipple and most of the areola. The kicker is that if the radiated tissue doesn't heal we are looking at a mastectomy with TRAM flap to close the wound. At this point I just want to be done. Am hoping to avoid the mastectomy with TRAM. We are both taking the week to consider. On one hand it makes me angry and sad, on the other it makes me glad to see an end in sight. I go back to the sentiment I posted in honor of my friend, "She chose to survive with courage, grace, and humor." I still miss her, though I know she is near. She taught me so much!

Quiggy, I am thinking of you and hope you are doing OK. Hope everyone else is well and ready to enjoy JUNE!

PoppyK

Hugs, mqt!

WndrWoman

Mqt64 Your friend would be proud of how you are living up to her motto. But it is okay to cry some tears, punch a few pillows, and feel frustrated. Good luck with your decision and the surgery. Thinking of you.

ladyb1234

Huge (((hug))), mqt64!

Quiggy, how are you doing?

Beachbum, think of you often!

Hugs always

CoyoteNV

mqt64 ~ Neither option sounds great, but after what your last year has been, the end of it all does sound wonderful.  Other than the fact that the worst case scenario means more time in the process and more discomfort and surgery, the end result may not be as horrid as it seems.  I had a bmx and reconstruction with implants (I did lose both nipples) but they really look good with minimal scarring.  I'm not familiar with the TRAM flap process, because I was not a good candidate for it, but I know it is the #1 choice for many women - very natural result.  Nipples can be replaced, tattooed, or temporaries if you want.  I chose streamlined and never worry about chill bumps or too shear white T's.  Important: I do not feel disfigured.  My PS is excellent. Ask to see photos of previous work. (Mine are now poster girls <with no head shot>)  Keep in mind there is likely to be a need to adjust the other breast for matching.  By law, that is covered by insurance. 

I know this is all very emotional, but keep the practical side of your brain in the game. I wish that it hadn't happened to you, but now that it did, make it work to your advantage. You are comin' round the bend to the finish line....at last!   You go girl!  
Hugs.

mqt64

Thanks everyone for all the good thoughts and hugs.

Coyote, I thank you for your thoughts. I am not so worried about physical appearance as physical healing. Reconstruction is the farthest thing from my mind which may be hard for some to understand. Perhaps I am asking for the impossible but what I want is a healed incision, a boob that doesn't hurt whenever I change position at night or it gets bumped the wrong way. And I don't want hard, necrosed tissue left in there leading to multiple repeat biopsies to make sure there isn't cancer in the dense tissue. It may be too much to ask, I don't know. I am tired. I guess time will tell. Looking for the courage, grace, and humor. I am punching pillows Wondrwoman!

CoyoteNV

mqt64 ~ That's a good thing and I do understand that.  I have faith that at some point, that will happen - you will be healed. The way there is tough.  What I am saying is don't even worry a moment about the possibility that it might end up being a mastectomy.  I'm certain that by this time you know almost as much as your medical team about this issue.  Like the rest of us here, I'm really saddened for you and the others that have had this nasty problem to deal with.

About that sore boob at night.... not so sure that that is so uncommon.  I can be counted among the number that deals with that - for me it is my ribs still.  I'm betting mine is nothing compare to what you are dealing with, but don't you just long for a good night sleep?

Beachbum1023

Hello wonderful ladies! I wanted to check in and see how everyone is doing. For those of us moving out to no treatment, enjoy the break. I see many who are still dealing with issues left from the winter. I hope they all resolve soon. But I do see lots of recon coming as well. I had a failed immediate recon then rads, so I am thinking that it stops here. I've read a lot, but with the way they had to remove the tumor and close the mastectomy, I don't have much to work with. And all of the time off and recovery, I just don't see it for me. I want to finish healing, and lose the chemo weight I gained and get stronger. But I go back to work on Monday at my new job, so I think I want to focus on work, and finding me. And I want a summer to hit the beach, last year was spent at the Clinic for me. Then I'll think about doing recon, or not. But right now I am pretty happy not being a patient, and dealing with more physical issues. My head is in the game with one, and other than sorting out my clothes that don't work with my sexy sports bras, I'm ok with it.

Take Care everyone, I hope you are well. Cheryl

WndrWoman

Quiggy. Just thinking about you and your upcoming surgery next week. Sending hugs.

Beachbum102 Good to hear from you. Enjoy your summer.

quiggy

Hi everyone,

Emotional week for me. Still no MO, no visits since December. PCP is booked, I've actually never met her. Dr Pepper (yes) is my assigned PCP but can't get appointment.

BS sees me but only willing to discuss new lump and surgery.

I really do have great coverage, SUCKS I can't get care. I have called, complained, begged.. no luck.

Feeling lost and apprehensive about Tuesday surgery. Like Mqt64, I just want to be done and stop feeling sick and have a pain free boob!

Just getting to a point where I can't see a future without all this crap. I know it's there, just can't see it. I don't even worry if the mass is cancer anymore I just want normal, any normal.

mqt64

Quiggy, gentle hugs. Is there a way that you can request a new pcp? I know trying to think of one more thing you need to do may seem like too much but this is ridiculous. You need someone to take care of all of you! I hope your planned surgery means your infection is gone. Hang in there. You are never alone in this. I'll be thinking of you on Tuesday. My hole is draining goo again so am back on antibiotics. My ps will decide on Monday if surgery is this coming Wednesday or the next one. Just 3 more hyperbaric treatments. Hopefully that will help the radiated skin heal. We will be done some day, hopefully sooner rather than later.

CoyoteNV

Quiggy~ I went online to check something that my sister, who is a Kaiser member, said.  There are patient advocates to help with the kind of issues you are experiencing.  Kaiser has information about it on their website. Put "patient advocate" in the search box on the Kaiser site.  The overall information is a bit non-committal, but the list of topics offers some contacts for cancer patients in particular.  It might be worth a try. 

Hugs and prayers.

 

quiggy

mqt64, infection is ongoing. Surgery is to remove and biopsy the new mass and to clean/look for infection cause (stitches?).

Sorry you're still is this awful state. Hopefully your surgery will get you on the road to healing. Hugs