Starting Chemo March 2015

Jackbirdie

Amber - surgery tomorrow, though right? Thinking of you.

DavisD

Theresa-I am convinced there is a connection between the severe relationship stress starting 5 years ago followed by a bad gyn infection, continuing nerve pain after infection, then DCIS, multiple herniated discs, Sjogren's (which I know is imflammation related), an incarcerated umbilical hernia, neurological symptoms (abnormal MRI and EEG), and then the grand finale Breast Cancer again. I don't think you go through life being physically active, engaged and socially involved and boom...it all goes to hell in a hand basket! I think the stress I went through about 5 years ago put something into motion that just snowballed...sounds conspiratorial I know but I believe I heard stress makes the body release cortisol which promotes inflammation...I haven't researched since I started the chemo craziness but I'm going to try to educate myself some more. I believe it is all somehow related and I think you're right about imflammation being the root of all evil/disease. I think my rheumatologist will be open to trying the naltrexone.. In terms of weight and diet I have changed how I eat but the past few months I just haven't been able to eat enough. I changed to a vegetarian diet in 2011 after the DCIS diagnosis. I could improve how much and how often I eat, I never eat fast food anymore mostly because there isn't anything not fried and vegetarian! I eat very little processed food. I really appreciate your input and getting me thinking again about the bigger picture. Katy, I am so amazed at you and don't you for one minute discount the steps you've taken and are continuing to take! We will get there one step at a time...

Italychick

Diane, I just got a report from my step son. Wednesday he quit all medication and started the low dose naltrexone. He has gone from bloody diarrhea and severe hip pain radiating up to his ribs from his ankylosing spondylitis (AS) to solid poops with no blood and has no pain from his AS. Daughter said they are holding their breath trying to not be too optimistic (he did quit drinking beer too), but we are all praying the LDN is going to help him!

Interestingly, my husband did his masters thesis in anthropology on cortisol, and he is huge on cortisol regulation and its interaction with stress. Maybe that is a part of how he has been able to get me through this shit so well. I will take it! The man is seriously a brainiac, two masters degrees, anthropology and computer science. So he understands the physiology part, and then applies the analytical engineering discipline as well.

I really think my cancer came from (when I don't think it was from carrying my cell phone in my bra, haha) a time about 5-7 years ago when I took a terrible job I had to walk away from (gave me nightmares where I cried in my sleep for three months), my daughter had a miscarriage and two surgeries for endometriosis and lost an ovary and had a fibroadenoma removed that we thought was breast cancer, had to get my step daughter out of a psych ward and into a drug rehab hospital, nursed my darling chocolate lab Buddy through cancer until he died (I still cry when I think of him), along with being overweight, eating bad, and not exercising. So I figure if I reduce stress, exercise, eat well, keep my weight reasonable (working on that), I am doing the best I can. One of my biggest stress avoiders is no office gossip. I can't believe how much of a stressor that is!

Are you making sure you get enough protein? We need it to counteract chemo. If I can't figure anything out, I eat eggs because I know how much protein they have.

Katy, according to online, 5,000 steps is equivalent to 2.5 miles per day. It all counts.

I know, I'm chatty today, sorry. But my brain is doing some serious thinking

Jackbirdie

T- not chatty. Lovely and helpful.

Diane- thanks for the vote of confidence. I hope you get some relief.

shaz101

Thanks Diane, no I'm not with the rabbits, just a bit down. I'm so sorry you're so stressed.

I've been on moxicam for 6-7 weeks and pyralin-en for 4 weeks. They're not working yet. So over being in pain. I can't even be bothered telling anyone how much pain I'm in. It doesn't help. And they don't really want to know. I can see their minds wandering off if I start.

I've made an appointment with my BS to get a referral to plastics. I'm going to have a double mastectomy it recon. I want to take back some control. The risk of a second primary is too high for my liking.

Carrie37

Just when I thought insurance companies couldn't be more screwed up....apparently someone in another state with the same name and date of birth as me has all her hospital visits billed to my insurance policy. OMG!!!! 😡😡😡😡😡

Jackbirdie

Carrie- that's insane! I'm so sorry. That will be a mess for them to clean up! And I guess the "other Carrie" won't be fighting to help get the bills back under her name, huh? So sorry!

Sharon- I am so sorry, deeply sorry, that after all you've been through you are headed for more surgery, and a deeply emotional decision. I am sorry to say I understand. You have my support and love, as always. Anything I can do, please tell me. Hugs.

ksusan

It's as if they've never heard of plan and group numbers or birthdates.

ksusan

Katy, my note to LGFB:

"While I applaud you in theory, as a breast cancer survivor I'm aware that the majority of the products you provide include parabens and other carcinogens and hormone disruptors. Beauty and skin care products without these dangerous ingredients are available. Why you'd give cancer-causing items to people with cancer confuses and angers me. It is, if not simply stupid, a great example of pinkwashing that should be denounced as loudly as possible. When a family member was diagnosed last month, the first thing I did was alert her to the toxicity of these products and warn her off the LGFB invitation. This is theoretically a valuable service, but please imagine how it feels to be so vulnerable, believe you're being helped, and instead discover that you've been given a bag of carcinogens. How would that not make you suspicious of LGFB's intentions?"

Jackbirdie

Brava K! Powerfully elegant. Or elegantly powerful. Both, I think.

Jackbirdie

This is what's going on with Ulta- Whitney and Eileen started it Mom

Subject Your insensitive ads Response By Email (Sarah W.) (10/05/2015 10:19 AM) Thank you for reaching out, Katy. You absolutely do matter to us. As a guest and cancer fighter, yours is an important voice we want to hear. We understand your frustration and would like to hear from you directly. A member of our executive guest relations team would like to talk to you personally this week. Please reply to this email with a preferred time to reach you. Please know we are truly committed to the breast cancer cause and we appreciate your time in reaching out to help us better understand the perspective of a breast cancer fighter. Thanks again for reaching out. Sincerely, Sarah Wyatt Ulta Beauty Guest Services Auto-Response By (Administrator) (10/03/2015 04:41 PM) Hello! We got your message -- thanks for getting in touch. We promise to give your inquiry our full attention. You'll hear back from us within 24 hours. Thanks so much, Ulta Beauty Guest Services Customer By CSS Email (Katy) (10/03/2015 04:41 PM) I found your ad/cover celebrating gorgeous hair simultaneously with breast cancer awareness highly insensitive. I am a breast cancer patient and lost all of my hair. My eyebrows, eyelashes, and the rest of the hair on my body. As of today I still don't have enough hair to even make lather. I am now a former customer. I would think many people in your company looked at your cover and ad before it was released and I'm finding it hard to believe so many people could not see it was in bad taste. I think you should show some sympathy and decency to cancer patients instead of just jumping on the pink ribbon bandwagon. Thoughtlessly. Sincerely Kathryn xxx By the way, I am not a politician, a competitor or an activist. Just a cancer patient, saddened by your actions.

Jackbirdie

I started a thread over the weekend called What Hurt Me Most During Treatment, about the LGFB program. And I sent this, directly to LGFB, as KSusan above, this morning.

Dear LGFB-

I wanted to voice my complaint about the product I was given at the LGFB program in Coos Bay, OR. At home, I opened the bag, containing many items from many different manufacturers. I checked them for safety on ewg.org's skindeep database. About 75% of what I was given was listed as having known carcinogens. Really? Giving these to a cancer patient while telling her you care about how she looks and feels?

I will tell you how I feel. I cried all afternoon, in disbelief, that you, the ACS, and my local hospital have been so callous in this appalling practice. Then I threw it in the trash. What a waste.

The idea of the class is nice. Either give away safe product or don't give away any product at all, and stick to wig styling and scarf tying.

I am deeply hurt by your actions.

Sincerely

Katy

Breast Cancer patient

(I hope you all don't mind me posting this in our March chemo thread- just want to keep you up to date on my subversive activities

ksusan

Thanks, Katy. You may want to redact some of your personal info two posts up--you don't need spam bot contact!

Jackbirdie

yikes!!! Sometimes I just get too excited. Thank you

ksusan

pboi

Sharon...so sorry to hear you've been down and in such pain. I understand the frustration of being in pain...you sometimes just want to complain, to be heard and comforted and get some relief. I'm hoping your meds work for you soon.

That's a big decision you've made with your upcoming surgery. One I understand well. While I will not be doing the reconstruction, I am having a prophylactic mastectomy next month. In my case the risks of another primary are too great not to. While I am done with chemo and rads...I still don't feel done with treatment yet...this feels like it's dragging on and on, one thing after another. I just want to reach a point where nothing new is coming up and I can just coast along for awhile...maybe soon. Hugs to you Sharon!

Ksusan and Katy...thanks for sharing your posts. I wholeheartly agree and you both have stated your points more eloquently than I ever could have. Thank you for speaking up!!!

PB

Trvler

Sharon, I am so sorry you having so much pain. Was it from the lx? I am sorry if i missed a post about it. I know coming to a decision to have another surgery is a tough one. Sending you love and hugs from the other side of the world.

Jackbirdie

Since it's the middle of the night in Oz, I will butt in for Sharon. She was dxd with rheumatoid arthritis and that seems to be the source of bilateral joint pain all over. Poor dear.

Trvler

I am sorry, Sharon. I remember now.

DavisD

I heard from my oncologist about the MRI of that liver lesion. He said it was too small and too hard to get to for a biopsy. The best approach is to repeat the MRI in one month. If it has grown or changed, I have something to worry about. I'm hoping it doesn't. I'm not going to freak out this time. I really can't do anything about it.

Theresa-I'm so excited for the possibilities this will help your step son! It also gives me hope. I printed out some info on Naltrexone and Sjogrens but haven't had time to read it yet. Your hubby sounds just the person you needed in your life and I'm sure you're who he needed. It's interesting you had multiple stressors about 5 years prior to dx as well. I think there's something to it...I almost feel like something broke inside me when things just kept happening and my body just couldn't recover..I don't know but I think there's a connection for sure. I'm probably not getting enough protein. I do eat eggs but still have to work at eating and thus preparing is a challenge. Thank you so much for your input and I love your chatter! Oh, about the office gossip. Absolutely! I avoid toxic people and behavior at all costs. I can feel it pull me down if I'm forced to be in a meeting or whatever with negative people.

Sharon-I'm sorry for your pain too and I really mean it. I understand about being tired of even sharing it...I've had so much chronic pain with this autoimmune disease and I know doctors other than my rheumy don't really get it and they always bring up the counseling and stress level I'm under....what's stressful is having constant pain with not much hope of it going away any time soon! I'm learning to manage it and try to stay positive. You can always private message me about anything and I will understand. I hope your decision for a bilateral mx helps you feel more in control and lessens your chance of recurrence. I'm with you all the way! I think we have other ladies out there facing similar chronic conditions and they understand too.

ksusan and Katy-Brilliant ladies! I wish I'd had the energy to take more action. You inspire me!

PB-I understand the feeling of wanting things to just move on without any new drama...just give me my boring life back! Hugs to you tonight

Jackbirdie

Diane- how wise your words are. I'm so glad you are packing this little detail up and putting it on the shelf. It's been so great to see more of you lately.

Italychick

Diane, I love the chats back and forth about taking charge and really, that's what you are trying to do right now. Take charge of things instead of letting them control you. Keep on it, and I hope you get the pain under control, however and whatever works. If anything I said helps you, that makes me feel great inside.

Sharon, I totally get where you are. I'm so sorry you keep getting more layers of the sandwich piled on. It seems like the most asked question I get is "are you feeling stronger" and people just want to hear yes

IndyGal35

Diane, do they have your next MRI scheduled? I'll add it to the trusty calendar!

Carrie, take heart! The bracelet is on its way to you!!!!

It's been high drama here today. The good news is that I finish rads on Wednesday!

The bad news is that I called to see if I can get in to see the PS to get my TE's deflated some later this week. (You guys know how miserable I've been with them for soooo long now.) I've been calling them every 3 weeks to get deflated to see if that'll help with the near constant pain I've had since 7/7, but I got denied due to rads. Now that rads are ending, we don't have to worry about the foob shape changing, so I thought it would be an easy task.

The MA told that they can't work me in since pain isn't an emergency. I understand, but she was so rude that I couldn't believe it. Then, she ALSO refused to call in a Percocet refill (even though my last script was filled 2 months ago) and referred me to a pain specialist that can't see me for another 2 weeks. I wish I could quote her verbatim, but I totally wanted to throat punch her. They completely devalued me as a patient and treated me like a drug seeker. If they'd just deflate or remove these freaking TE's, I wouldn't need drugs!!!! And, honestly, how can being this sore after 3 months not spark some concern that maybe, just maybe, there's a problem with my healing?

Anyway...I'm calling a different PS tomorrow to see if I can get in to see them quicker and to see if they can either deflate me or remove these things. I can deeply empathize with everyone in pain right now. It slowly wears you down and robs you of your activity. I pray I can get in for surgery soon instead of the 4-6 months recommended after rads.

Jackbirdie

Lee- I hate the way you were treated. And that idiot just CREATED a pain emergency by refusing to refill the script.

I would call back and ask to speak to someone else. That is ridiculous and you have given no reason for them to jump to the conclusion that you are abusing. Ask to speak to the dr. Leave a message for the dr. Become a squeaky wheel. Of course, as I write this I realize they will think you are desperate for drugs and exhibiting drug seeking behavior. Ugh.. You must get through to the doc.

SpecialK

Not excusing being blown off, but plastic surgeons don't like to prescribe pain meds, that is why they will refer to pain management. Also, they are not as good at fixing pain, and pain management docs excel at it - so it is possible that a pain management doc can solve the problem. I was accompanying a friend to his oncology appointments while he was being treated for a huge sarcoma in the lining of his pleura. The MO referred him to a pain management doc and I was very impressed by his approach to pain, and which combinations of meds worked for different types of pain. This doc's level of knowledge on the subject was a good thing for my friend

Indy - also, it is likely that for another PS to treat you at all you will have to fire your current doc.

Italychick

too bad we can't share medications. I could give you enough to send you to Lala land. Have you tried going to a general practitioner? My MO was a major pain regarding pain medication, and my general physician wrote prescriptions for me. Just go around the assholes.

And here I am again, wanting to go bitch slap the doctors for treating you so poorly

IndyGal35

I thought the same thing, Katy.

That makes me feel just slightly less hostile, SpecialK. I have no issue firing anyone at this point. That probably sounds knee-jerk, but there's nothing worse than being treated bad by a physician's office. If a mechanic left an awful rattle in my car and treated me like crap when I called to get back in to get it fixed, I'd be calling the BBB and throwing a fit. That's how I feel about doctors right now. As always, thank you for your insight. It helps me to keep perspective

The surgeon I'm calling tomorrow was actually my first choice, but she doesn't do immediate recon cases with my BS. Now that the BS surgery is done, I really only need a PS. I'll see what they say.

PS - I thought about calling my family doc, T, but I was afraid they'd flag me as a drug seeker for "shopping" around. What an awful feeling

Italychick

Lee, two words - fuck them. If they want to flag you as a drug abuser, fine. If you can't get drugs when you need them, what the hell? Listen, I had my surgeon give me oxycodone, the stuff you can overdose on because it has no Tylenol or anything in it, and I had my general doctor give me 60 Valium, and a two month supply of antibiotics. No issue, no problem, and I haven't used any of it. Getting pain medication from your doctor is your right. Last I checked, you went through CANCER treatment

I would call them back, make an appointment, harass them, do whatever you have to, and make them give you at least two weeks worth of pain medication until you can get to the pain management doctor. They can do that, easily.

Jackbirdie

I think it was Allison the other day who said it was so sweet to have someone who would (and could!) beat someone up for you. Thanks T, on behalf of Lee. She doesn't deserve this. And long term pain WILL make you lose your mind.

Italychick

I can't even imagine what she is going through. It makes me feel terrible