Wellness

[AkaGoldie]

F1, I forgot to say hi, I always feel like I'm forgetting someone!  hugs to Lannie, bow , Grace , graciesmom,  kindle , Jackie , belle maestra. ALL of you!

goldie 

[GCR18]

Goldie = I am on some steroids, but I can't think of the name.  Ill ask again in two weeks.

Lannie = sleep wasn't meant to be.  I had a hangover feeling from taking the Tylenol pm.  Not doing that again tonight.

I found I can have more time off from work and am seriously considering it.  I was given the wrong info when I first signed up for FMLA.  I was told I had 480 hours per year, but I have 6 months per year under short term disability with full pay.  That's what happens when you outsource HR.  I can start next week through the end of chemo.  Then I still have 21 days of vacation.

[JackieHN]

GC, old nursing trick with tylenol PM. Just take 1/2 of one. No hangover. 

[IndigoBlue]

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@JerseyGirlNJ wrote:

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@wagirl wrote:

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@JerseyGirlNJ wrote:

Hi, I haven't posted here in a while. My 3 month C-Scan is coming up on Friday and I have a bad case of scanxiety. It's been 4 years since I was diagnosed with cancer and it has come back 3 times. (twice last year and again this year). I'm looking for advice on dealing with scanxiety. After my two surgeries last year I was very postivite but when it came back again this year I've been having a hard time trying to be positive.

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Hi JG-good word ---scanxiety word--- it sure does say it all. So sorry about all the cancer zombies invasions you've had . I would feel the same way too. I don't have a good fix- it for that. It's hard to focus on anything other than cancer and especially in your case. Writing here would help, I think. We will listen and throw in our 2 cents. Forgive me, but I don't recall your history .Does your hospital have a cancer resource center that you can contact ? Mine did and offered all sorts of help in all sorts of areas. And had specific groups to sit on for the various issues we are going thru. I'm glad you are on top of your situation and am glad for the tools there are to detect all this---maybe start a journaling; I found that very helpful. Doesn't have to be all butterflies and daisys---I pretty much ranted and raged in the beginning. But stay with us, girlfriend. We will help if you need us!!!

PAM

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Hi Pam,

Thank you for your response. I live an hour away from Philly (well it's more like 90 minutes during rush hour when we go). They have support groups for sarcoma but I can never make the meetings. There are no sarcoma specialists in NJ and everytime I look for a support group it's for a different type of cancer. When I tell people what I have they give me the blank look..kind of the look that I gave my surgeon when he told me what I had. I had NO clue what Leiomyosarcoma was until I went home and did research. Oh and doing research online is a bad idea! I'm my worst enemy and think the worst. Just seeing the survival rate online freaked me out! Every 3 months I go with questions for my doctors. I need to learn to live in the present moment.

Julie

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@JerseyGirlNJ

My sister was diagnosed with leiomyosarcoma more than 5 years ago, which was contained to the uterine area. She underwent a hysterectomy, and so far there has been no recurrence. I well understand your searching online for information. I did that with her, and I did that for myself with my triple negative breast cancer. In one aspect, knowledge is power. But sometimes you also feel your knowledge leads to asking questions of care providers they don't have answers to. I so totally get it.

[IndigoBlue]

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@bow regard wrote:

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@Lannie wrote:

GCR - hoping for some good zzzzzzzzz's for you tonight...........

bow  - waving hi to you and hoping all your test are perfect!

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Thanks so much, Lannie!!!   ~~~~ waving back to you!~~~~

I was just looking at PEOPLE Mag.'s Sept. 21, 2015, issue and an article about Joan Lunden is in it.  She has written a book entitled Had I Known.. She finished chemo 9 mos. ago for TNBC.

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@Belle_Femme

Although I haven't read the People Magazine article, I've seen YouTube videos of Joan Lunden discussing her TNBC treatment and immediately thought of you. Think you two are on the same game plan.

[IndigoBlue]

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@Lannie wrote:

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@Belle_Femme wrote:

So what does the radiation oncologist do if you have a religious objection to tattoos?

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I didn't really consider it a "tattoo" or I wouldn't have had it done.

Although we do joke about it here, it is just a very tiny dot that is like a permanent marker for the guidelines they need for radiation for medical reasons and not for permanently decorating or defiling our bodies as some of the pagan religions did in Bible times.

I think if one truly did object, they could use another method or procedure.

Lannie

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Confession time. My name is IndigoBlue and I hate tattoos. In lobbying against my own permanent tattoos for radiation treatments, I said "I don't even have pierced ears. Why would I want tattoos?" My pleadings won out. Instead, I got small ink dots (marked with an "x" and enclosed in a circle about the size of dime), which I treated with care so as to not wash them off during showering. The marks lasted all too well, as about two-thirds into my radiation, I had a special dressy event to attend, and I wanted to wear an outfit with a lower neckline, which would have exposed the top-most ink marking. My radiation oncologist gave the go-ahead to erase the marking for the weekend, and the staff re-marked me for my next session. Ta-DAH! It all worked out.

Just a thought. How do radiation specialists tattoo cancer patients who already have a lot of tattoos?

[IndigoBlue]

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@F1wild wrote:
Hi all!
I'm still alive - yeah! I've also been thinking of you and sending positive, healing, peaceful energy to those I know and the others I've been reading about.
To be honest, I was devastated when our friend lost her husband to Melanoma, especially after I blabbered on & on about the merits of Yervoy as a treatment. Since my favorable treatment I've been in the less than 0.05% who has major after effects - severe adrenal insufficiency (they now have an official name for it) and recently discovered heart valve impairment. Not to worry as I feel I must have 9 lives.
I'm also still not able to see that well with my yet untreated corneal dystrophy and double vision. Blablabla!
Tomorrow is Oncology Day at Mayo. I think this may be the first one I'm not dreading (let's see how that works).
I promise to be here more.

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@F1wild

We've never conversed, but I've followed your story. It is so good to see you back.

[AkaGoldie]

F1 glad you are posting again. I'm sorry that were devastated about our friend losing her husband to  melanoma. You gave information, and had no ill intention, I'm sure of  That So don't feel bad that her husbands result wasn't the same as yours. Please post with us anytime. But please don't feel bad. None of us EVER thought you did or said anything wrong. Again, welcome back. 

Goldie

no idea why part of my post is black?

[bow regard]

Hi everyone!  Saw my Medical Onc. today.  He said all my tests look great...also told me that in June during all my tests there showed up a 5mmX9mm nodule in right lung.  (BC was in left breast.)   On PET scan yesterday the nodule remains the same with no change.  My onc said that this is very small and could be a result of infection or any number of things not cancer.  He said that this is not breast cancer.  He said it is possible that it could be a primary lung cancer but he doesn't believe it to be cancer.  He said cancer grows rapidly and this has remained stable since June.  I will have a CAT scan of lungs in March and CAT scans every 6 months until Sept 2017.  My next visit will be to see my surgeon in Dec., then my Radiation Oncologist in January.

I have now rented a small cottage down where I'm redoing the house and will head back there on Friday.  I intend on keeping my doctors as long as I can.  They will be 4 hours from me, but I think that with the situation I'm in, it is best I live near my daughter.  I made up my mind to take all this one step at a time and that's what I'm trying to do.  It will take a while for me to completely make the move anyway.

Our weather has cooled off a little here and though it is still hot by most standards, it feels so good....a cooler fresh breath of air....very welcome.

Wishing all a good upcoming weekend.

[Belle_Femme]

Lannie:

"Community property" is a good description! I've had no fewer than 8 doctors and a nurse practitioner examine my breasts and that doesn't count the ones doing ultrasounds, mammograms, biopsies, MRIs, and heart ultrasound. It does seem like everyone you meet is checking them out. I suppose the tattoos will look like just another few moles, but there is just something that makes me mad that this illness leaves a mark on us, literally!

Belle