Skin rash progressing- need some encouragment

[yanyan]

Past few weeks have been tough knowing my diseases have progressed and learning about Christie's passing. It seems selfish whining about my rash as so many others are dealing bravely with more serious problems but I really feel scared and this is the place where I can share my feelings with people in the same situation.

Long story short- 2 months ago new red rash started appearing on my cancer breast. About one month ago I showed it to my oncologist who thinks it looks more like a broken vessel not cancer. So I went on my 4 week vacation and came back yesterday looking at myself again and again only to confirm it has gotten even worse. If it were a broken vessel it would have healed in 4 weeks at least got better but it didn't. The redness now covers almost half of my breast and slowly crawling toward the other breast. I have a few appointments next week including an appointment with a surgeon for a punch biopsy.

I guess the plan is to change chemo again. I am very scared and tired at this point although I still have quite a few options available. My hair has finally grown long enough for a pony tail and I was hoping things wouldn't change so fast that I could have surgery and get off chemo. I know having a negative thought does not help its hard not to when your hopes are let down. On one hand I feel so hopeless and done with this cancer thing, on another hand there are so many others living a quality life with cancer and finally get to NED. It could be me too. I start to understand why some people choose to quit treatment because it just never ends and at some point you tell yourself that's it I'm done. It's amazing there are quite a few miracle ladies on this forum. Their stories light up hope for so many of us. My heart saddens when I hear about people stopping responding to chemo drugs and some are diagnosed at a less severe stage.

My almost 7 year old daughter wrote me a note while I was gone. She wrote " mom I miss you. I hate being without you. I hope you have a safe flight home..." I was tearful when I read the note and wondered what if mom can't be there for you someday.

I guess each time our diseases progresses we panic and then we get treatment, we feel better and more hopeful. I am also debating whether I should quit working and get on social security. I have worked for about 9 years figured it qualifies me for disability if I become disabled at 38. I tried to work full time and maintain a normal life as my way of dealing with cancer. Now I am just so worn out and concentrating on my healing is more important. I read Jessica's post that she is applying for ss after more than 10'years. She is such a fighter!

Any thoughts comments are appreciated.. Thanks for listening...

[NEDenise]

Yanyan...
I'm so sorry you're feeling this way. I totally understand...
I get what you're saying...
I hear the pain and uncertainty in every word.
I 'live' in that very same place a lot of the time lately. It's hard not to.

Friend...you are NOT whining. You have very real concerns.
You have stage IV cancer...not a cold or the flu.
Heck! What we're dealing with even outranks most of the things they advertise drugs on TV for!
I'd love to "worry" about a bad case of erectile dysfunction or overactive bladder instead of dying from BC for a day or two...how 'bout you?!
You voice whatever comes to mind about your health! It's important!

And, you are always 100% right about what you're feeling...
you have absolutely no need to apologize for any of it!

What you're dealing with SUCKS!
It's unfair.
It's terrifying.
It eats away at your strength, your confidence, and your spirit.
And, worst of all, it scares your daughter.

I've been in and out of the full time work force a couple of times during this nightmare. I did not work at all during chemo or radiation (I'm a teacher, and missing days sporadically would have been too disruptive for the kids.) I returned to work full time after my brain mets got zapped...foolishly, I thought my life might return to normal...hahaha...silly me. I'm not working again now...again with the sporadic absence thing.

At first, not being able to work made me sad. I love teaching. But gradually I've come to realize that my full time job right now is...not dying.
Fortunately for me, my school district carries long-term disability insurance for me. It's not my full salary, but it helps...a LOT.
I'm thinking now about looking into SS benefits too. I guess there's always a chance I can return to the classroom...but I'm not even sure I would...if I could.
Relaxing, and enjoying the time I have left (decades of it, I hope) doesn't sound so bad to me.

And, yes...I do think that when it's time to stop treatment, we know it. I know my Mom and Dad both did. But I don't feel like either one of us is there yet.
We both have people (our children) who are counting on us to struggle through the lastest hurdles...and come out strong on the other side.
And we will.
You don't start out at 3c like we did...jump to stage 4...fight like hell...and then throw in the towel without MAJOR kicking and screaming!!

Hang in there. Focus on today. Be kind to yourself!
And, hound your medical team until they find answers that satisfy YOU.

Sending prayers and a big hug your way...
Denise