Fatigue, Depression, Guilt about DCIS - Help!

Greenivy, welcome!  I'm sorry to hear about the staff in your oncologist's office.  By all means, if you can report the incident/s, I do think you should; it is just not right.  Are you able to get a direct line with your oncologist at all?  I would think that your oncologist should know and resolve that situation; otherwise, the doctor who referred you to the oncologist.

It's frustrating that, as DCIS patients, we are not really considered on the top of the list of oncologist.  At least for me, too, that's what I experienced.  When I verified with my oncologist if she is now my primary since I was diagnosed with cancer, she readily said "No, I would still have to go back to my primary-- usually either the family physician or my OB-Gyn, and they would still do their regular checks on me, while she will just have to see me every 4 months for my white/red blood cell count.  And as for mammograms, I should clarify with my OB-Gyn if she will still do or the breast surgeon who did the mastectomy on me, although she would still have to do my regular pap."  Wow!  I just sighed and told myself I better not stress myself with that right now.  I am still in-waiting anyway for my next surgery, so I guess I'll deal with it after that.  Although I'm hoping they can give me better follow through instructions later on, rather than me initiating the calling again.

As for me, my problem right now is billing.  My breast surgeon's office pre-billed me and has not returned to me the overage, so now I don't have enough money in my HSA to pay for other bills.  And, of course, I have to follow up again tomorrow and see what's going on.  Stress... stress.. stress...    Not good!

Faerywings, so true about us getting hard on ourselves sometimes.  I guess, at some point, we really just have to step back and come to terms with the fact that we are not Superwoman after all.... Or, at least, realize that we can't be, anyway, all the time.  And having this Big C, probably, is good, in a way, to also slow us down and really just tell ourselves that we can't be doing everything all the time.  Although the truth is, this is one thing that we are not used to, and we still have yet to get accustomed to.  

Ah-- that's interesting to know about the alkaline water and the mushroom extract.  And the goji berries are nowhere to be found here-- Trader Joe's or Sprouts.  I was asked to try Whole Foods-- other than that, internet ordering.  

But, yeah, Lilyluv, you're right-- there's really no magic cure for the C.  Now, it seems like, the alkaline water and the mushroom extract... goji berries... etc are all just placebo effect.  It would be one super breakthrough, if there is a miracle cure... and we wouldn't be here anymore discussing and exchanging notes.  Thanks for sharing the link-- I'm just on the first part reading, and it seems very interesting; I will read more later.

I also don't have a huge appetite every time now; but when I crave for something, I can be unstoppable.  Like today, I craved for pizza and chips, and nuts.  No dinner; just munching on those from 4PM today until about 9PM.  I was planning to have ice cream to replace real dinner, but I felt guilty already (actually bloated), so I stopped.   Anyway, beginning tomorrow, I told my husband, I will be good again since we bought a lot of greens and fish for this week.  Yeah-- Lilyluv, I have 2 days left to psych myself up to shopping for new tops-- just hope I don't get lazy.-- (:  I actually emailed the Pilates instructor last night and asked if she could work with me for a modified routine, and it was nice of her to reply and have me come early so she could talk to me more about what I can and cannot do.  Yeah-- super psyching myself up to getting back to normal this week.  Wish me luck! (:

Lettie-  I haven't met with a MO, but my BS will be doing 6 month follow ups/mammos/ultrasounds for 3 years. She is fabulous and even though I had"just" DCIS, she never minimized my feelings, even though I was. I wish everyone could get a dr as compassionate as her.

I have one friend who told me that I should be more positive about my ability to do "stuff" while I am doing rads. I was telling her how I expect to be very tired over the next several weeks and I don't know how much I will be able to work. I clean houses on the side, and thankfully I am friends with all of the people I clean for so if I needed to take the month off they would be cool with it. It would royally suck to lose the money but , what's another bit of debt at this point? haha!! She said that other people with cancer can go to work. It kind of irritated me b/c yes, other people can go to work. But Lyme is like a multiplier, and seems to really make everything harder to bounce back from- of course-- it has wrecked my immune system, and is systemic for inflammation. I test positive for Rheum Arthritis even though I don't have it, and my ANA is very high too. Anyway I think I am just rambling to get the annoyance out of me. Sorry that you all had to read it! LOL!

I start rads today, wish me luck!

How was the rads today, Faerywings?  Hope it was not too much, considering that you are still also dealing with your Lyme.  By the way, are you still doing your cleaning side job?  Isn't that going to hurt more your condition now, esp. with the Lyme? 

I talked to the billing office of my BS, and urged them to contact my insurance so they can confirm that they will be paid for their wrong billing and that I am no longer responsible for that since it had been covered by my deductible.  Good news is they called me back today to confirm that they can expedite refund of my overage payment.  What a relief!  That was a little more than $1K, and that sure could go a long way for my family's medical needs for the rest of the year.

Lilyluv, I read the entire article and that's so true--- I have heard so many times before that "surgery might even hasten cancer."  In fact, I was encouraged by a long-time friend to go to this "healer," and try so that I can avoid surgery, but I didn't go.  Now, I don't know if she thinks I am regretting or what, since I told her that I had positive margins and that BS has to go back in and shave off more skin.  I do not mean to offend anyone here though.  I am a believer, and I can say that I have strong faith; but I have not gone to the next level of believing in faith healers.  

Today, I went to do Pilates.  I did most of the stuff, but to a modified degree.  I was afraid I'd feel tired after, but not really.  I just rested a little bit when I came home, then started working on some bills and paperwork for my husband's business.  Up to now, I am still awake.  I also didn't eat much--- just a plate of organic tortilla chips and a glass of pineapple juice.  Actually, what was funny was that I felt uncomfortable about my expanders throughout the Pilates session.  I felt like I was stretching it towards the back.  The people there might have thought I was weird.  I was taking a peek at my boobies, and also feeling it, as, somehow, it felt like it was "warping"-- LOL!   I probably would have to get better-fitting sports bra for good support, but not exactly "suffocating" my expanders.  Overall though,  I think it was a good idea that I did this first, rather than plunging into zumba right away.  Maybe, another week of Pilates or so, and I should be okay to zumba.  But first, I hope, I don't die at my desk at work on Wednesday-- I deal with a lot of people on the phone, lots of computer and paperwork.  I hope I can keep a good attitude throughout the day.  One more day... 

My surgeon and family doctor couldn't be nicer, very compassionate.  I am going to report the staff member of the oncologist and if I have a recurrence I will be going to another oncologist.  The thing is the surgeon and family doctor have both told me I have had a really good attitude about everything.  

How was cleaning on Tuesday, Faerywings?  Hope the cleaning wasn't too much for you. I just learned that a friend of mine from high school had Lyme also, and she was literally down for almost 2 years. She said she could not even get out of the house. She was also too weak to work that she even requested for part-time hours during that time. I'm glad to hear that yours seem better, and that you are able to get out of the house and work.

And your PT, Lilyluv?  One thing I learned from this experience is that our body will tell us exactly when it feels it is ready.  It will ache when it is not moved; hence will feel always better with some exercise; but it will also ache when it is moved too much, hence you cannot also over-exercise it.  I hope you find the right balance for your arm.  I am actually having neck pain now, just on my right side, though-- actually, beginning last week.  And I'd like to think that it's from the way I position myself in sleep.  I still could not turn to my right side very comfortably-- the sides of my expander bother me; I feel like it will get squeeshed.  So, I always have a pillow tucked by the side of my right breast when I feel like sleeping on my right side.  The problem is, my neck lifts up, otherwise, I'd feel my chest squeeshed.  Or, if I want to skip that fear altogether, I just lie on my back... and, of course, I have no choice but to keep my head straight up, too, and which I guess has caused this feeling of neck sprain as well.  

At least these are my thoughts.  My aunt's though is different--- she wants me to be extra observant and urges me to tell my doctor about it.  She worries now that my thyroid has started to act up-- I have history of thyroid disease myself years ago, and a family history of thyroid cancer-- one of my aunt's died of that, and her daughter (my cousin) is having that problem now.  Although, I tested negative when my BS ordered thyroid testing for me prior to surgery, my aunt said I should mention it during my next visit.  As for me, I just want to free myself of thinking of another sickness-- LOL!  I'm not even completely done with my procedure yet.  

Yeah-- thanks.  My husband is not the type who would spend his time calling and asking about bills.  Prior to this incident actually, I was overbilled by the hospital for my MRI.  I had the MRI end of last year and I knew (and also confirmed) with my insurance that I am not to pay anything, since I've met my deductible for the year.  Then, when the statement came early this year, the hospital was still charging me for $500 something.  Good thing, I called.... even if I had to call the insurance and the hospital back and forth.  It turned out that they submitted a wrong code for part of the service to the insurance company, so the insurance reverted back to them saying that "it's not covered so patient has to pay."  At least, now I'm cleared of paying that $500+.  So, yeah-- I think it really pays to check with your insurance how much they will pay for a procedure before actually doing it.

Faerywings, I'm surprised though that Lyme is not covered by insurance (?)  I hope the medication and treatment is not too much also for the pocket to handle.  Except that if it weakens you, you'd end up not being able to work. I wish you luck Faerywings.  Dealing with one thing is already hard enough.

By the way, today was my first day at work-- I survived!  I was super slow though-- always stared at my computer or the paperwork before I actually did something-- Ha! Ha!  It was like anesthesia attacks... or maybe senior moments.  Or just forgot how I had to go about stuff at work--- LOL!  I'm glad my first day is a Wednesday-- short week for me. (:   

Hi, Maryanne!  Thank you for sharing your information on thyroid issues.  Now, it does leave me thinking if there may indeed be a correlation between BC and thyroid problems.  As far as my BS was concerned, when she read about my thyroid history, she wondered why my primary physician (family physician) did not run a thyroid test on me ever, so she right away ordered for one prior to my surgery.  When I asked her about the possible correlation, she said there's none, but still would not rule out the possibility that they may have an effect on each other.  Quite vague... but I thought just to let it be, esp. when she told me that my test ran negative.  I'm just curious though, aside from what was picked up by the labs, did you actually have symptoms?  Did anything change or worsen after you were diagnosed with DCIS?... and after your surgery?.... or all changes only after you underwent rads?

So you asked about why Lyme isn't covered by insurance... I could write a novel but I will give you a quick run down since I advocate for Lyme Awareness but don't want to bore you at the same time.;)

There are many factors in it, but the main one is that the IDSA (Infectious Disease Society of America) made the diagnosis criteria based on false information due to financial conflicts of interest, lots of politics and quid pro quo. The CDC and insurance companies use that criteria to deny coverage. That is one part. Another factor is the testing for Lyme. Basic labs, like Lab Corp and Quest also use the IDSA req's and they test for the wrong bands of antibodies and for not enough strains. So there are a lot of false negatives. There are a few labs that do much better testing but ins co's won't cover those tests as they consider them "experimental." 

So #1, is that they want to deny that Lyme, esp. chronic Lyme exists. When drs who are Lyme-Literate, treat patients, they have been attacked by the IDSA and Ins co's and many have lost their medical licenses from that. Now, most of the Lyme drs have to treat "under the radar" which means very little gets processed through insurance. It is really crazy. 

Sorry that this ended up being long, but like I said I could have written waaaaaay more!!! If anyone every wants to know more about Lyme and other Tick-Borne diseases, I am always open to help and to answer questions etc.

Fairywings, I agree with your docs, rest is important!  I was diagnosed with Lyme about 10 years ago, did a round of anti and have never tested positive since but.....

I have recently finished my 5years on AL, did the lumpies and rads.  I kept a watch on my skin (pals advise me to) and when it got the tinest pink...I yelled to the RO for cream.  Got stuff from them  I did have one blister appear under the bid boobie but it was near the end of the treatment. RO figured we could make it to the end and we did.

No way of knowing when as it is sort of like sunburn and dif for all.  Just keep a watch and yell BURN! when you think you need help

Thanks, Proud. Hope that you never have to deal with lyme again!

Ruby- oh yes, ITA. I am the same way. I feel like when I nap/rest, I am not getting anything accomplished and am just wasting time. The SW keeps telling me that I *am* doing something when I rest- letting my body heal. I wonder too about the constant fatigue, supressing the immune systen and then the resulting inflammation and how much of a role it is plkaying into me health issues.

Hi, all!  Just came home from my first party after surgery-- a wedding reception of a friend.  And I'm tired.  But, it was a good feeling to have survived 5 hrs laughing, talking, and going around with 4" heels and my normal wired bra (had to take out the pads though)--- shhhhh.  Truth is, I couldn't find anything else to wear-- LOL!  My girlfriend who picked me up said we'd wear cocktail dress, but geez--- couldn't get comfortable with any of my party dresses... even the ones from my daughter's closet.  First of all, I had no proper strapless bra to wear and I had to hide my "untoned" arms.  So, I decided to just wear a shiny loose top and a pair of black bootleg leggings, put a little more make up on, and curl my hair.  But then I looked at myself in front of the mirror, and something was missing-- I still didn't feel like going to a party.   So, I braved it and wore my 4" heels just to confirm that I was indeed going to a party!   Seriously though, it really felt good to be out and doing normal stuff again.  Except that now, I'm T-I-R-E-D.  I didn't even do any dancing. 

And yes LIlyluv, Rubiayat, Proudtospin-- guess all of us agree that this whole BC experience taught us one thing--- to slow down and take time to relax.  

Tomorrow is Sunday again. Before BC, it was church...lunch...grocery after grocery after grocery (chasing coupons and the best deals in town)...home... put away stuff... prepare/cook for dinner... dinner...work on computer stuff-- bills or do the books for my husband's business and some personal email and other stuff in-between....put away stuff in kitchen and prepare tomorrow's pack lunches for myself/husband/daughter.  Now, I'm not sure.  Last Sunday I did only half of my Sunday routine (and even went only to one grocery and then CVS.  Tomorrow, I have my coupons waiting.... but, let's see.  Just by reading and re-reading this series of activities that I do every Sunday, I get tired already.  Probably, I'll try to do more... but for sure, slower than usual; and with more breaks in-between.

Faerywings-- didn't know much about Lyme until now; thanks for the education.  But I do believe that you should really slow down.  Remember, I mentioned to you about my friend who had Lyme-- she shifted to part-time work for 2 years.  I think, she even stopped working for a while prior to shifting to part-time. But, I'm glad to know that you are also perky and bubbly at times.  Whether it's really the caffeine or not, I hope it's also a sign that your body is being very receptive to your treatments.  Still, don't overdo things, and make sure to get enough rest as well.

Lilyluv, it's nice that you went out to have your hair colored.  That's always such a refreshing feeling... Makes you feel like you're a new you. Yeah-- rest up and pamper yourself.  You deserve it!

Have a good rest of the weekend everyone...

Good morning/afternoon/evening and Happy Monday! I was supposed to get to sleep a bit later today. My kids are on Spring Break and instead of having to get up at 5 am, I set my alarm for 7. But guess what freaking time my body decided to wake up? 5.15. argh! I stayed in bed until 6.15 but my back was hurting so I need to get up and move. But I have my coffee (I LOOOOVE my coffee!!!) and will be getting into the shower as soon as I am done. My goodness, aquaphor is so darn.... sticky. I leaned to sleep in a tank top under a loose t shirt or else every time I roll around (which is very often in my case) the t-shirt would get all stuck and bunched up and it was just an icky feeling to me.

Lily- you are so lucky that you had a bullseye. Studies show that only about 30% get one.It makes treatment so much easier, esp if it is an early/non-disseminated case.  I have become in love with cornstarch. I grab a handful, stand in my shower and throw it all over me. Thanks for the advice. I am  doing fine not wearing a bra, but driving and the seat belt is becoming a pain.

I am really trying to get down time in every day. I think that now that *I* have accepted it, and my family is recognizing that I*need* it, it is making t much easier for me.

I hate to say this, but I am so glad that I am not the only one who finds things like getting hair done or other things that should be relaxing-- to actually be exhausting. But I hope that you feel energized with new color today!

Woo hoo, Go Lettie and your heels!!!! Didn't it feel great to feel "normal" for a few hours? Good for you too, to recognize that you (and me!) can't keep the same pace we did before.

Mayanne- That is always what concerned me too- I joke that I am like a shark, as long as I keep moving, I am ok. As soon as I stop, I am dead in the water. I 

I'm still trying to get into the swing of things, Maryanne.  But, thanks for saying that... and the whistle, too, Faerywings.   Truth is, sometimes I feel like I have it already; and then, all of a sudden, I will just feel so weak.  Like this morning, I woke up early so I can take my time dressing up for work.  But, 15 minutes past the hour I should be out of the house, I found myself just getting slower and slower.  By the time I reached the parking lot of my office, I was already tired.  So, when I reached the office (which was only 2 flights up, by the way),  I felt I was already catching my breath so bad that my co-worker asked, "Are you okay?"   So, really now, with only 3-4 months to regain my strength back, I don't know... I guess I just have to try my very best anyway.  So, when I  am down after my next surgery, it won't be too bad.  And, hopefully, after that, it will be a smoother ride to recovery.

Yes, get those hair colors kicking, ladies!  We all deserve to feel a brand new us, even just for a while-- until the gloss and the shine lasts.  Then, just do it again.  I have warned about the use of chemicals on my body now; even make up and face toners/moisturizers, etc..... plus, I actually have tattooed eyebrows from way back which I re-do every 2-3 years... but I don't really bother with that now (esp. since my tremors can't make me line my eyebrows well).  I figure, I might as well give myself a little slack; I should feel better about myself, even just for the moment, so that if the Big C will really gobble me up sooner or later, anyway.... at least, I had those beautiful moments with myself.

Faerywings, are you not continuing your aromatherapy business?  That sounds like fun!  I'm sure with competition that must be tough.  But, maybe, even if you will not really make money, just keeping it as a hobby and selling during state fairs or special events would be nice.  Is it expensive to maintain?  Or simply just a lot of work?

By the way, just something to share:  My aunt called me over the weekend to tell me about her new friend in their village and her bout with BC.  She is a nurse, and was diagnosed of BC Stage 2 more than 8 years ago, and had mastectomy.  She is now cancer free and told my aunt that her doctors never helped her with her diet but, being in the medical field, she had access to information anyway.  She shared that her miracle pills were "berry supplements"--  blackberry, acai, and blueberry supplements-- which she pops 3X a day aside of eating lots of fresh ones, too.  My aunt has been hounding me since (not even a day has passed), so I decided to go to Sprouts and find an equivalent since I am not really a big fan pills. And I found "Whole 5"-- a liquid form of 15 whole fruits (mostly berries), 13 energizing minerals, and 2 beneficial power herbs.  With the herbs though, I guess, I would have to stop this 3 weeks prior and immediately after my surgery; but, for now, I'll try and see what this can do to me.  I tried this today, after Pilates, and it was actually good-- refreshing and filling, too.   That was actually my dinner.  My husband made a smoothie out of it, with banana.  Anyway, something to try... feeling like Popeye now. (:

Lettie,  

I know what you mean about that dragged down feeling.  I got up this morning feeling refreshed, getting ready to go to the gym - the wellness program associated with my treatment.  Felt fine until I walked around, and then realized I was physically tired.  With me, it's always the feeling that I weigh about 100 pounds more than I do.  I'm not sleepy/tired - just heavy tired.  

Faerywings, what an awesome talent.  When I had my bad cold last week, I thought I had a sinus infection so had looked up alternative ways to heal it and came across a blend of oils on Pinterest.  Of course by the very next day, I could tell I was getting better, so didn't buy them.  My daughter is very much into all natural things, and speaking of hair color, she's only 33 and has gray streaks in her dark hair and likes it.  I'm trying to see how I feel about that myself.  Oh well I have plenty of time to decide - no weddings or grand balls coming up!  Oh, speaking of fairies, on Pinterest, I've seen so many little Faerywings houses and doors in trees to simulate little homes, etc.  My great grandfather who died long before I was born, was from Ireland and always told his family he had seen a fairy - it's family lore!

Thanks, Dawn,  I'm looking forward to that!  That heavy feeling first hit me during the first week of radiation and then my body seemed to adjust.  It has come back off and on - especially this past week when I got that cold.  I can't take Tamoxifen, so I won't be able to blame anything other than radiation.  I'm glad to hear that you're feeling better.