January 2012 chemo

NancyHB - I'm curious - what type of insurance do you have? Other than paying copays, what are you paying for? I have BC/BS HMO and I've only had to pay copays - $30 for each infusion because I meet with my MO every visit. I've never had to pay for Neulasta and I've had 5 shots. The only other expense I have is the $100/day copay for hospitalization. I spent 4 days in the hospital with pneumonia, so I have to pay $400. Are you keeping track of your mileage? It will be deductible (along with all of your other payments) on your taxes. My radiation is covered at 100%, although I'm pretty sure I'll have to pay a $30 copay every time I see the RO. Somehow I doubt I'll see him every day I have radiation.

We have Priority Health POS.  When we started freaking out about the Neulasta copay to the hospital biller she freaked a little herself - they have the exact same policy and she was slated to start chemo and Neulasta the following week.

I should explain that we have insurance and I'm grateful for that - but we're learning that there are multiple levels of "payments" that surprise us around every turn.  For example, we have to meet an individual deductible of $1500 a year...AND an out-of-pocket of $3,500...AND a $4,000 a year copay for Level V pharmacy benefits (which is how the Neulasta is being billed; regular prescriptions are Level I and there is no maximum a year we pay on that).  So that's $9k we have to cover.  That does not include office visit copays, which are $45 every time we walk through the door for an infusion...and will be the same every time I walk through the door for each of my 30 radiation treatments.  It's...alot of money, particularly since I've been basically unemployed for 2+ years. 

When I did our taxes for 2011 (I had my biopsy and lumpectomy last year; by the end of 2011 I had already cost almost $40k) I was able to claim a hefty tax deduction for medical expenses - including mileage, thanks Char!  The one thing that really saved us is that our insurance "year" begins October 1 and not January 1 - and I started the diagnosis journey just after October 1.  We didn't have to "restart" the clock again with copays and deductibles and such again January. And I expect the worst of this treatment to be done before October 1 this year.

I know it's better than not having insurance at all, or having a less-than-stellar insurance plan.  When I look at how much this has all cost - and how little of it we have actually had to pay - I really am grateful.  It doesn't sound like alot, and it really isn't in the grand scheme of things, but it's just one more thing this f-ing disease is doing to me, to us.

I know - I should be grateful and shut up (that's what I keep telling myself).  I'm so sorry for dumping on everyone.  On top of the bills, I learned yesterday that my RO likes to wait 4-5 weeks post-chemo to start rads - which means we now have to cancel a vacation we've waited and saved two years for, and will lose the money we paid for it.  And it puts the ending of my radiation right up against returning to work/school/internship, and...oh sh*t, I'm just feeling overwhelmed.  I'm so, so sorry for complaining here.  I'm just so tired of this journey.

For those getting ready to start radiation - how long is your RO recommending waiting post-chemo?  Just curious...

I will finish chemo May 23rd and my rads start date is June 25th. So about 4 weeks seems to be the standard.

Thank you, ladies.  Gayle, we planned to be away for a week, but could cut it down to four days if necessary.  It might be possible to go later in the month, if we're lucky (we're going "Up North" to the beach, but the cabin's are all reserved and paid for well in advance so we can't just move things around too easily) otherwise we just won't go.  But - if I can talk my RO into starting 3.5 weeks after I finish chemo, I'll be done just in time. 

On a totally unrelated note (because that's how my brain works these days), I realized from my posts and conversations with other people recently that I'm losing my happiness and joy, and becoming quite unpleasant to be around.  I don't know why but not only need to work on it, but apologize to my friends here.  You are always the most amazing source of support and I am so grateful to you, and I appreciate you all so much.  Thank you for listening to me bitch over the last few posts.  Thank you.

Off for #8 of 10!!!  Have a wonderful day, my friends, and blessings to you all!!!

Thank you for your words of wisdom, NCbeachgal.  You're so right.  *hug*

Here's something that will make everyone laugh.  I came in for my 8th of 10 treatments, so I'm getting really close!  Anyway, I told my clinical trial coordinator that the neuropathy in my left hand is getting worse - I dropped a dish I was washing in the sink the other day, and getting my necklace on (the clasp) can be difficult at best.  She says, "Can you unbutton buttons?"  I said I thought I could, so she asked me to unbutton the buttons on my shirt.  So I grab the top button (they're very small) and try to unbutton it.  I keep trying - I'm not getting anywhere, can't feel the button and can't seem to get it through whatever small hole there is.  After a minute I realize - the buttons are decorative and note useful, so of course I can't unbutton them.  :-)  We all laughed outloud so hard I'm sure they heard us in the hall.  When I get to the infusion room another nurse says, "Can you please unbutton your shirt?" and I realized my funny story has made the rounds of the oncology center.  Truly needed the laugh today, was so glad I could provide one!!

Just a quick check in...



7 of 12 weekly Taxol/Herceptin later today and am still aching and hurting from the last one! I am finding myself "retreating" more and more each week because I am just becoming overwhelmed by the fatigue and various pains now (muscles, joints, ass/butt hemahorroids, numb fingers). I also seem to have a mild cold with a cough, but not enough to delay treatment.



My poor hubby is now also unwell with enough of a gastric problem to be given a specialist appointment next week to get it checked - I am very worried about him and can tell, based on his grumpiness, that he is very worried about himself too. For goodness sake we are both in our mid-forties and seem to be now facing all these health challenges we didn't expect to hit until we were in our 60's or 70's!



So although I am reading here I am finding my strength levels so low that I am not posting much I'm sorry. Please know I am thinking of you all everyday... Jenn

Okay, ladies, thanks for the recents posts, the tears, the anger, all of it.  I sure did need to hear it.  Went for my first RO consult today.  It is at a different hospital as my MO is an hour away but decided to do rads locally.  The RO was great - he spent almost an hour with me going over all details.  I guess his kindness, caring, and wisdom just got to me.  He was very understanding about how much I've been through, which you know, really helps even if it is his business.  I was all strong all day long, got home and just have been crying all night.  It just feels like, "Oh God, here we go again, a whole new ball game that I don't now how to play." 

But RO said, by all means go for a week's vacation and worked around my vacation schedule!   Nancy, talk with them about the vacation!  We need it.

NCBeachGal - appreciated your honest talk, anger...gosh do I feel it. I've had several people "hint" to me that I'm angry.  I want to slap them - LOL!!  I SO GET IT!!   Oh, I am sorry about your hangnail.   

Jenn - hang in there - I just had #8 of 12 and getting mighty weary.  Oh my, so sorry about your husband.  He's been through alot.  Certainly it is bothering him.  Prayers for you both!

I have no encouragement left in me tonight, but I guess we can finish this out.  I hope! 

NanchHB - no need to apologize! And I agree with the others - take your vacation!!!! We're going to do some type of "celebration vacation" after I'm done rads. DH doesn't get vacation time until July, so I'll be done by then....thinking about taking the boys and going on a cruise. I don't want to lift a finger for a week!

I've been unpleasant to be around for the past week - a screaming banshee is more like it. I almost feel like I have PMS, but I've been in chemopause since Feb. Not sure if it's nerves since I finished Taxol today and now have to move on to the next phase - rads -which I'm nervous about. I also have to go back to work on 5/7. I've been on disability for 5 weeks and I love being home. I've never wanted to me a working mom, but I'm the one that brings in the money - poor DH hasn't had a lot of luck in the job dept. He finally found a good job last June, but makes about 1/2 what I do. My job isn't too stressful, but I commute an hour into the city, taking 2 trains and a trolley - which is exhausting. I could drive in but parking is $20/day ($13 if I'm really lucky). Maybe I need to break out the Xanax again. 

CHARB22 - CONGRATULATIONS ON FINISHING TAXOL!!!!  

Climbed out of bed this Friday morning after being in it since Tuesday afternoon. I'm pretty sure it was the Nuelasta shot that knocked me down... I still feel pretty out of it, but I just can't lay in bed anymore. I seriously don't know how people who work away from home do this -- and I'm so glad AC is every other week. I'm really hoping my "recovery week" is a good one.

Jenn -- I can sympathize with you completely. My daughter, only 20, recently had to have an endoscopy due to severe stomach issues. Since she was away at college, my husband drove down and took her for the appt. They biopsied several areas and told her that her entire stomach lining was red and inflamed. After waiting almost 2 weeks for her follow up, we found out that the biopsies were negative and the doctor diagnosed her with IBS and stress. I know she was worried about me, about being behind in school, etc. I hope the outcome is similar for your husband. Stress does awful things to our bodies, and he's got to be worried about you. Hugs to you both, hang in there. 

Char, congrats on being done with Taxol!! Whoot!

Nancy, I'm in agreement with everyone else -- take that vacation!

Nice to hear from you Bela. Rest, rest , rest, and take your pain meds. I hope your recovery gets a little easier every day.

{{HUGS}}}

Its been two weeks since my final chemo tx and I'm starting to feel human again!  The only remaining SEs are some neuropathy in my feet, mostly my toes and weird looking fingernails.  My energy is slowly returning and my appitite is back.  I feel like today marks the real end of chemo for me!  Coffee tasted really good this morning!

I start rads in 10 days and am not really looking forward to it.  My RO initially said 33 days but changed that to 28 days when I saw him for the simulation.  I guess that is good.  I am getting a little worried about the possibility of heart and lung issues since it is my left side is being treated.  I just hope that my RO team carefully planned my tx.  They did seem very careful and exact while marking and positioning me during the simulation.

For those ending chemo "YAAAAYYYY!".  Just keep in mind that the chemo is still in your system for a while, so you might not feel like celebrating right away.  However, as your body gets rid of the toxins, you will begin to feel much better!

Diane - I'm so sorry you are going through this!  We were promised an easier time with rads.  It doesn't seem right!  No one has mentioned nausea as a SE.  Did the Dr give you any meds to handle this?   I remember my mom feeling sick with rads, but that was in the 70's when the tx was much different.  She also had terrible burns.  My RO said things are different today.  I sure hope so.  I also hope that the rest of your tx is non-eventful and the nausea is controlled!

Bela:  So glad to hear from you, so sorry you've having a hard time.  Glad you made it through surgery.  Be kind and gentle with yourself - and your emotions - for a while, and please keep in touch and let us know how you're doing, and maybe what we can do for you.  Sending you love and hugs; wish it could be more.

Diane:  Did not know that nausea might be a SE - I hope you feel better quickly!  

Janet:  Glad to hear you're feeling better - and thank you for giving us all hope that we will, one day, start to feel better!!!

Char:  Congrats on your final chemo!!  

I decided this weekend that I am taking whatever vacation I can take - my RO will simply have to work with me.  It's pointless to be fighting so hard for my life if I can't take a few days off to actually enjoy my life.  My body is working on healing; now my soul and brain (and marriage) need a little TLC, too.  Thanks for your support and encouragement!!