January 2012 chemo

Wow Nancy- my heart really goes out to you. I wish I had some advice but since I live in Canada meds are all covered. But no system is perfect- I have never had or been offered an Oncotype test as I do not fall into certain criteria (already had 2 positive lymph nodes). Nancy you are an amazing person and I am praying for a positive financial result for you. We are all here to listen to each other and we are NOT whiners!! Sometimes I feel that I can only really be understood by all of you as we go through this together

Sleepless- I also had wobbly legs that almost gave out after AC#1 and then less so after #2. So far so good on #3. But I was really scared after the first AC.

Wishing everyone who had treatments this week minimal side effects and gentle hugs to all.

denise-wonderful blog post! thank you for verbalizing so well!

wishing everyone a better weekend!

FLDREAMER:  hugs and more hugs and a really big shoulder to lean on.  You're safe here to cry, vent, scream, and feel whatever you need to feel with absolute acceptance.  I am sorry for what you're going through with your daughters.  As mothers we often build our lives putting our needs secondary to those of our children (I am guilty of that myself) and they expect it to the point of desperation at times.  Good for you for standing up for what you need and setting boundaries that are reasonable - for them, and for you.  If you do not take care of yourself, you will not heal - and we want and need you here, with us, on this healing journey. 

I'm sorry for the loss of your hair, but glad you were blessed with kindness in your wig experience.  There are so many angels out there helping us!

I'm tired of people telling me, "It's only money" and "you can't take it with you" because, well, there ain't none left to take with me anywhere.  And that "only money" is what keeps me alive by paying for my treatment.  Money isn't important - except when it is.  I wouldn't presume to tell you that everything will work itself out and God will provide (things I hear every damned day from a variety of people who are NOT paying my bills) because I don't know that that's true.  But there are organizations out there that can help and I hope you seek them out sooner rather than later.  First and foremost, talk with your doctors and MOs about your situation and ask for help, for bill forgiveness, for reduction, for a payment plan.  Be realistic about what you can afford and what you cannot.  Call your credit card companies and play the Cancer Card - I'm doing that now and they're actually happy to work with me to reduce our payments to help us find the hundreds of dollars a month we now need to pay for treatment.  Talk to your auto lender about giving you a couple of months off payments (they can add them to the end of your loan).  We have even talked about bankruptcy ourselves, but be careful - new rules allow credit card companies to count bankrupted accounts as "income" and you may be taxed on that "income".  Take care of yourself - the added stress of financial problems makes your body and soul work so much harder at a time when you need to be focusing on your health.

More hugs to you as you start your day.  I'll be thinking about you, and hoping for a quick resolution to all of this.  You deserve peace in your healing.

Nancy

I get the whole financial woes thing ladies!!  I am still paying my deductables from last year.  Have not even opened this year.  I have been looking for a decent job for a couple of years(I am an art teacher).  Working as a sub right now and without my parents help I would not even be getting by.  My husband threatens to sell the house every other day and cries that he has no money ( he is visiting friend and family in Europe right now on a ten day vacation ) He pays for mortgage and electric and feels that is a huge marital sacrifice.  My mom has been buying me oil this year (thank god). Believe me...I know your pain!  If it was just me I wouldn't care if I was homeless...just don't want to disrupt my beautiful 12 year old who loves it here and is doing great in school!

I am not allowed to even be sick in peace.

Sorry for the rant

Thanks Kelly.  Yes unfortunately art is always one of the first things to go.  I keep plugging along  (:

Peggy and Denise - Hope you have a quiet recovery from your 4th AC.  Yay for the break. Peggy! Your whole body and mind will have time to recover and get stronger!  Nice try Denise.  Sorry your dr didn't go for it.

My 4th cycle started out quiet but eventually found me in the hospital for 2 days.  I developed a fever and diarrhea Thursday evening, 7 days post 4th AC.  It seems I tested positive for a c-diff bacterial infection.  Chemo wiped out my good intestinal bacterial and c-diff took over.  Two days of antibiotics and fluids, in an isolation room on the oncology floor (depressing) helped and I'm back home.  The neutropenic diet served was not very exciting!

 I'm not looking forward to my 1st taxol this friday.  That is putting it mildly - I'm terrified!  My MO warned about the possible SEs.  Hand foot syndrome was mentioned. I'm on my feet all day.  Not looking forward to this at all. Our social worker sent me a text on Friday that maybe I should consider working part time.  I'm trying to avoid this at all cost. I used 7 weeks of sick time after my surgery and I don't want to use up the remaining time.  Also, I think after a certain amount of time, my boss can consider filling my position according to the FMLA.   I carry our family insurance.  It is great coverage.  After reading about all the insurance issues, I realized just how lucky I am.  As long as I receive my tx through HUP (my employer), my co-pays are virtually nonexistent.  I guess I'll just have to see how it goes.

 Karen - Can I come sit in your car and scream with you?  Then we can pretend to go out for a drink or two!

Diane and Kelly - The Art field is so difficult these days, especially in education.  My daughter is in her second year at the Tlyler School of Art (Temple U). We have been trying to encourage her to keep an open mind about her major and to look at job potential before making any big decisions about her major, etc.

And I also agree: STUPID CANCER!

Gayle - I'm hoping that this was a one time occurrence.  The attending onc sent me home without antibiotics since I should be trying to re-establish my gut bacteria.  So, probiotics were suggested and close monitoring of symptoms.  If the fever or diarrhea return, I need to get in touch with my MO or go to the ER. C-diff is difficult to control and can become serious without a full functioning immune system.  I'm not certain where that leaves me for my upcoming taxol ride.  I'm sure I will be having the neulasts shot after at least the first tx.  I'm asymptomatic now, so something is working (immune system or reestablished good bacteria).  I'm learning new things everyday!

Now I see that lot's of us are afraid to open the bills...thought it was just me!!

Insurance~MSKCC did warn me of possible Insurance payment problems, and they were on top of the right away. I also returned every Friday for them to administer the Nuelastra shot, this was cheaper for me, as it was billed through the hospital and not my Pharmacy. I called Horizon originally to completely discuss my Chemo coverage and they told me that they would probably hit me for this years deductible on the first Chemo bill. Horizon from the start of "you have Cancer" assigned me a"Horizon Case Manager", who is a Onc. Reg. Nurse, who calls me, periodically to check on my progress (of course the nurse said it was to answer any questions I may have~like I bought that %#%)...I am careful what I say to her and I make sure I'm realllllyyy nice to her (I wasn't through the surgery ) as she can make my life miserable through this whole Chemo thing, and the 5 YEAR PILL after the 12 weeks of Taxol...god I really hate this lady calling...Barbara it's me, how are feeling since last we spoke...like shit thank you.

We have a total out of pocket of $4500.00 each fiscal year, so it's $9000.00 so far for us (pharmacy co-pay not included) I did add up last years and I paid $247.00 over the 4500.00 and Horizon did send me a refund check for that amount 2 weeks later. That was a nice surprise for a change in the mail, so don't trust their addition, u could get a refund check too.

Also it's been 10 days from #4 AC and I'm doing much better than #3 I was human in 6 days, unheard for me and the Big S/E's have not come, except constipation (Which I attribute to the 3 days of pain killers not Chemo) a little Nasal head cold, slight issue in mouth (nothing like the sores before) eyes a little bit irritated...that was it, course now I'm jinxing myself.  Taste buds even came back quicker than ever...god I hope this stuff is working.  So anyone worried about #4, I Aced it.

4th and Last Neulasta shot~THE WORST of the 4 shots-Worst Migraine in my life (Sound&Light sensitivity) for 3 days, Bone Breaking Pain for 2 Days and the worst Neuropathy than any of the others, still have that now,UGH...

1st Taxol this Thursday~Cancer coming back is worse, repeat every hour as necessary.  My new Moto for now

I've had a slow bounce back from tx #3 and returned to work part-time yesterday -- I've been out of work since my 11/16 surgery.  I'm really wiped out and at the same time charged up that I DID work.  I think I'm going to take a long nap now -- maybe when I wake up this nightmare will be over!

Oh you are so right about this nightmare. 3am this morning I realised I haven't had a night or day free of pain or discomfort since diagnosis back on the 1st of December :-(



My port has failed, and my port incision is spitting stitches and I'm on day 4 past my 3rd tx and feel like crap. And tomorrow I have to go back to the clinic that installed the port so they can figure if it will work again. Imagining that's not going to be a pain free process.......



I know it's early days and I potentially have years ahead of me but at 3am this morning I just lay there and contemplated just stopping the tx and taking it as it comes.



Hmmm, I think a piece of peanut butter toast might be in order to get out of this funk...



Janet - so sorry to hear that you ended up in hospital!



To all with the finance worries - giant virtual hugs!



Jenn

Bern51 - Welcome to our 'nightmare'!  Sorry you find yourself here.  I think we all have had quite a few ups and downs along the way.  The SEs have ranged from the typical nausea to severe reactions.  Some are able to keep the course they started, while others have had to change treatment plans.  Take a few minutes to look back through the posts and you will see you are not alone.  As a group, we have suffered through physical, mental, emotional and financial difficulties.

Many of us found #3 to be particularly trying.  However, we represent a variety of treatments.  I just finished #4 of AC and found that it was the most difficult for me to deal with.  I believe there are others on this thread that are having the tx as you.  You might want to quickly search through the posts.  some of us have included our tx as part of our signature.

Good luck and stop by to share what you have learned along the way.

Jenn - Sorry to hear you are having such a difficult time with your port!  Hopefully they will be able to get it functioning again.  How many more txs do you have?  Never mind - just checked.  You have quite a few remaining.  I wonder if they could replace it?  One of the infusion Rns told me about having it placed on the inside of the upper arm.  She liked that position. Mine is spitting a stitch or two also.  I have one long stitch poking out of the small incision at the base of my neck.  I try to ignore it, but it does bother me.  I'm afraid to mess with it.  I might unravel.  

As much as I hate having mine, I don't know what I would do without it.  When I ended up in the hospital this week, the nurses on the onc floor accessed it right away to use for antibiotics, saline drips, and blood draws.  My arm was free and usable. The ER nurse was not comfortable using it and put an IV in my arm.  Not at all as comfortable!  I kept catching it on things.

I hope you made yourself a pile of  peanut butter toast sandwiches!!!!!  You deserve it!  (they happen to be one of my all-time favorite sandwiches).  Hang in there!

Janetanned - I am hoping the worst part is behind you!! I went through 5 weekly taxol and It has been bearable so don't worry.  I did have to switch to abraxane because I had an allergic reactic but I don't think it is very common.  One of the infusion nurses said she had never seen the reaction I had before.  Hang in there!!

Jenn- your port dylemma sounds dreadful.  I am so sorry...hugs to you.  I have had 6 weekly infusions and no port yet.  I am scared to get a port and I HATE getting IVs put in every week.  I am such a big woose.  Had trouble with a vein in my hand a few weeks ago and it is still swollen and tender.

cancer sucks ):

Hi ladies- It's been a while since I posted but just wanted to let you know that I was thining of all of you and echo what all of you have said about cancer sucking, wanting to feel normal, feeling like a fraud when people say I am an "inspiration," etc.  I finally am through the chemo portion (I had started back in the fall but had to take a break) and though I have more treatment ahead of me (Herceptin, Tamoxifin, TE exchange surgery), I feel that chemo does so much to us physically and emotionally that I feel that this was the biggest hurdle to overcome.  I hate that all of us have to go through this, but feel comforted by knowing that you all "get" what even the most well-intentioned friend/spouse/family member cannot.

 Nancy- What you were discussing with your husband about PTSD resonated so much with me.  Iwas having a smiliar conversation with my husband over the weekend. I felt a physical response to even driving in the vicinity of the chemo center this weekend on the way to a park with my kids.  I cannot think about eating this kind of chicken that I ate a lot during chemo - not because of the nausea but because it reminds me of chemo. We were planning to sell our house anyway, but I feel like I cannot get rid of my bedroom quickly enough because it reminds me of days spent in bed with chemo. I talked to a survivor that burned the outfit she used to wear all the time to chemo.I wonder how long we will carry this since the "trauma" is more ongoing, rather than a discrete episode. 

Jenn - You're a goddess for so many reasons.  First, the whole "draino in your port" to make it work thing sounds like it was awful.  I'm so sorry you had to go through that, but am hoping that now your port will work as it should and you won't have any more problems.  And second, any woman who can go through all of that AND THEN go home and cook up brussels sprouts and bacon and onions without running out of the house holding her nose *must* be a goddess!  :-)  Just thinking about that combination makes my smell-buds hurt (I'm having such bad smell/scent problems that I'm having trouble eating now).  You rock!!