Pissed Off at the World!

OK....so....

Turns out my girl's chemo stopped working....tumors grew and a new one popped up. Dr said, "without treatment 6 months would be optimistic"....so she begins a new oral chemo. on Monday. It's called Xeloda and it has crazy possible side effects, so I got permission to work from home for 2 weeks-ish...depending on how she does. Was scared to leave her alone. The new thing to do for cancer is immunotherapy, but there is only one study going on around here right now and it's closed and per the doctor, wasn't a good study. He believes that in 6 months or so, there will be lots of these studies and he is watching them so he can get her into one as soon as they are available....but we have to do something in the mean time.

I'm doing everything I can, but I'm basically helpless....and really pissed about it. I'm staying positive and hopeful, but the littlest things piss me off, a LOT! Some days I get tearful, others I'm ok enough to keep going, and other days I just want to tell everyone off.

Cancer Sucks!!!

Dashboards Confessionals by a Stage IV Breast Cancer Patient

So it's been more then a minute since my last update. T is responding well to the chemo....or was in the beginning. The tumors in her lungs were shrinking at such a fast rate that instead of ordering the regular protocol of 4 more chemo sessions, he did 2 more and then scans, but these scans showed the tumors didn't grow or shrink....the doctor seems to think it may be because we only did half the protocol, so 2 more. Last one is this coming Friday, then scans.

Anyone else on this chemo, Kadsayla? If so did you have these side effects also?

...hiccups?

...tender stomach? (We call it the punch, cause it feels like someone punched you in the stomach)?

...an empty feeling inside, like something is drilling out your insides?

...nausea that comes and goes throughout the 3 weeks between chemo sessions?

Anywho.....getting to the DASHBOARD CONFESSIONALS

When T was 1st diagnosed, she started placing her phone on the dashboard of her car and just talking about what was happening....it's unscripted and very raw, so not for the faint of heart. She has started posting them on a new blog in chronological order...Please go check them out and by all means comment and let us know you stopped by. The blog can be found at...
 www.FMyBigC.blogspot.com

Peace & Love to you all.

Back in Chemo...

It's been awhile....

Tina's cancer is back for the 4th time. Started a new chemo (Kadcyla) with tons of premeds (steroids) as she is allergic to all the chemo therapies that work on her cancer.... sigh.

It's making her quite sick and we have 9 more weeks to go before new scans. Then based on results we either stop or continue. The tumors are in her lungs this time.

We swallowed our pride and started a GoFundMe page to raise money for her medical bills. If you know me, you know I HATE to ask for help. I prefer to be the helper, and I feel like a beggar right now, but here goes.

If you can afford to donate anything please go to the link below and donate.
http://www.gofundme.com/vjb5rk

If you can't afford to donate would you go to the link below and click to share the link on FB or Twitter and ask your friends to support Tina.
http://www.gofundme.com/vjb5rk

If you can ask your church or school or local news agency to put up a poster you can click on the link, scroll down and click poster, and it will allow you to print out poster and place it on your local public bulletin boards.

Peace & Love to you all!

On Edge

This coming Friday we see the doctor again and order new scans to see if our decision to stop all treatment was the right decision.

We stopped because we were not certain that the treatment was what was keeping the cancer away or not, but we did know that it was causing a lot of problems with Tina's health....permanent nerve damage, slow healing, and it was making her weaker by the day. We hoped that stopping would allow her to heal and grow stronger. That way, if there were a recurrence, she would be strong enough to fight and handle the medicine/poison.

I'm sooooo on edge now. Scared our decision was the wrong one. Scared the cancer might be back. I'm so nervous these days I can't sit still and I feel very alone in the world.

I've started guided meditation almost every morning (5 days a week) in an effort to control my nerves. I listen to Tara Brach's guided meditations and her voice in itself calms me, although my mind wanders throughout. I expect I'll get better at it, as time goes on.

We see the doctor in 5 days, I expect the scans to be ordered the following week, and results the week after that.

Send good vibes our way friends.

April 2012 - Going and Getting Stronger!

Things are going pretty good. No recurrence....treatment going well. The weird thing is I'm more afraid of a recurrence then ever....is this normal?

T has started working with a trainer at the gym who works with people who have limitations due to cancer & treatment. The effects are already showing. She seems to have more energy, and aside from some soreness in the she's doing really well. PLUS, having an appointment with a trainer, motivates her to go.

Really proud of her!

Update December 2011

Scans are clear......cardiac tests show minimal damage to my girl's heart, so treatment can continue.....whew!

Now scans every 3 months to check for re-occurrence and an echo on her heat every 8 weeks to check for damage to her heart from the meds...

...and we continue chemo every 2 weeks via IV (Herceptin & pre-meds).

The Good and the Scary...and the "Who me?!?"

The Good: T's Scans still look clear....no sign of a re-occurrence. (She has scans every 3-4 months for the rest of her life now)....WHEW! So Happy about this....I've been having mini freak-outs for weeks.

The Scary: Did you know that Herceptin CAN damage your heart?

We didn't either....no one ever told us that.

Now that T is almost done with her 52 weeks of Herceptin treatment, our new oncologist tells us she's surprised we haven't re-checked T's heart since August of LAST year.

So heart tests are scheduled.

1. If there is no damage, she will continue on Herceptin maintenance (a lower dose) every 2 weeks for the next 5 years (THIS IS THE BEST WE CAN HOPE FOR)

2. If there is damage (LET's HOPE THIS IS NOT THE CASE), we have to stop all treatment after the 52 weeks are up in a little less then a month, because...

THIS is the drug that works on her type of cancer. If your "HER2NUE +", meaning that this is the receptor that the cancer cells attach too, then herceptin is your drug, because it turns off that receptor. However once your heart is too damaged, you can never use this drug (the one that works best) again. So better to stop now. That way IF there is ever a re-occurrence, it is still an option that we know works.

Make sense?

WHO ME?!?!

After meeting with the new oncologist and getting all the info. above, I ran into the old oncologist packing up her office and stopped to chat. I am quite fond of her. She saved T's life.

She took one look at me and pulled me inside her office and told me to see a doctor. Who me?!?!, I said. Then she started asking me how much weight I have lost and telling me how exhausted I look. I was a bit taken back because I've been so concerned with T's health that I don't give mine much mind.....especially since I still have no insurance, until I'm eligible (which should be before the New Year sometime).

Truth is I have lost a LOT of weight in a very short span of time, but to be honest, I just have not been that hungry.....and I've never looked better in my eyes.....LOL.

I know stress & worry has played a major role. I've been having mini panic attacks and also I know, I have a leaky mitral valve in my heart......so basically, when I have a panic attack, my chest hurts like I'm having a heart attack. Now that I know what it is though, I don't freak out. I know it's a panic attack, and I wait it out.

Anywho, the doctor finally let me go after I promised to see a doctor as soon as I have medical insurance. I could tell that she wished I would just go now, but I do not have that kind of money and I'm sure they are going to want to repeat all those crazy expensive heart tests. Sooooo, since I haven't won the lottery this week, I think I'll wait.....hummmm....Do I look that bad?

I wonder if we will say goodbye tomorrow...

Tomorrow we go to the doctor for T's bi-weekly steroids & chemo and I believe this may be the last time we see the oncologist we have come to love and trust this past year.

I have to confess, I hold onto a hope that something will fall through or work out and she (the oncologist) will not have to move away......it's doubtful, to say the least.....and yet, my heart hopes for it.

Not sure exactly when her last day will be, perhaps we will get to see her 1 more time after this, but I think this Friday will be our goodbye to her.

This has affected me more then I thought it would. I find myself having a hard time sleeping and thinking about this way too much. I'm afraid of loosing the woman who saved my girl's life, who, I believe, can get her past the 5 year hurtle and make her well enough to grow old with me. My head says, this doctor has already devised a plan for the next 5 years, so what does it matter who she sees? the doctor we trust came up with "the plan". The plan is to continue the steroids and Herceptin IV, every 2 weeks for the next 5 years. Something that has worked a miracle so far.

Also, our doc (who is leaving us) has promised to stay in touch and monitor T's case from her new home in PA. THAT gives me some comfort as well....that.....and the fact that we get to continue with the same wonderful nurses that have been administering her chemo all along.

So why am I worried? I think I worry WAY too much about everything these days. The year long stress has taken it's toll on me and though things seem to be falling into a good place right now, I'm hesitant to relax....but I'm trying.

I think I need a day or night with my good friend Katie and copious amounts of drinkage....LOL. She's like a sister to me. A person who makes me feel completely comfortable and with whom I always enjoy myself regardless of what we do or talk about.

I think T has been extra stressed about all this too, how could she not?.....Like me I think acceptance is sinking in and she too is starting to feel better about life in general. This makes me happy, although I expect this Fridays visit might send us both into a small tail spin for a few days until we re-gather our composure again.

Life is looking up and I'm going to try and be less scared and embrace it with my girl!

A Little Bit of Sunshine

We're feeling it.....both of us.......hope. I sat in the sun for a little bit with T. We needed the fresh air and going for a walk is one of the few things we can do that don't leave T in pain.

She's finally starting to heal. Her range of motion is starting to come back, but she has to be careful. She can't drive yet.....tried it and it hurt too much.

Radiation starts soon.....probably within the week. I know that will exhaust her and it's affect will be cumulative.....meaning it will get worse each week. She's going to have radiation 5 days a week for 6 weeks......but......we've gotten through sooooo much, I know we'll get through this too.

We'll be paying the doctors forever.....we had a benefit last year and we payed some of our doctors bills, but this is a new year and we've instantly added another $20,000 to our debt. Nothing I can do about that except, be frugal, and make monthly payments to everyone.

....but there is Sunshine......I watched T getting more sick and in pain and getting worse and now I get to watch her heal and become more herself each day.....and I've learned to love more, not care about the small stuff, forgive more, see the world from a very different point of view, I've grown and am a better person then I was......and most important, just keep moving forward.

Here comes the sun

I THOUGHT I'd learned to worry less, but really I've just learned to deal with my worry better and not get so upset, I loose my hope......kind of a "can do" attitude but different.

That is all...for now.

No Clue What to Name This Post

So many things swimming around in my brain.....I burst out into tears at odd moments when alone and loose myself in the tears......other times I look at my T and I just know she can beat this...and I see us growing old together.....I can actually see us sitting on a beach soaking up some sun over a picnic for many years to come.

I cornered one of her doctors and asked for hope, and she gave it to me. She said Metastatic disease can me managed and she has patients with it that are 5 years out and a some 10 years out. There are microscopic cells with the potential to become cancer floating around her body, we don't know how many, or if they will.....but we will watch and do scans every 3 to 4 months so that if there is a re-occurance we will catch it fast and treat it right away.

If you make it to 5 years, your odds of survival increase a little, if you make it to 10, they increase a lot more......and every 3 or 4 months when she has a scan, I will have a week of being scared out of my mind waiting for the results.

....but in my heart I believe we will grow old together.....I have to.....and that's how we have to live our lives.

Us in 2008

Here's something they don't tell you....

....if you have surgery and reconstruction AFTER chemotherapy healing is long and PAINFUL!

Doctors seem reluctant to tell you what your in for until it's too late and you have no choice but to endure it......WHY THE FUCK IS THAT?!?!

...and it's not just doctors, it's people who have been through it who blog and write articles and not ONE mentioned 50% of the crap we were in for.

Then you go to the doctor and ask, "Is this NORMAL?"....and they calmly nod and say, "Yes"......well, why the fuck didn't you warn us? Hell, I felt like if we said, "3 limbs fell off and I grew a 2nd head", they would say, "yes, yes.....that's to be expected".....by who? Not us, 'cause no one said a word about this before.

Don't get me wrong, our doctors are the best around.....and the wonderful people who work for them.....and have cared for us, have been wonderful.....they obviously feel NOT telling us everything is better, I DISAGREE!

I'm exhausted from the 10,000 different emotions I feel every 15 minutes......EXHAUSTED!....as is T, and I'm not even experiencing the physical pain she is 24/7. She puts on a brave face when we leave the house, but I know, and I see the pain and exhaustion in her face.....and I'm sure she sees mine, although mines not physical.

I'm not complaining for me even, I'd do anything for her....I love her......the problem is, there is nothing I can do to take her pain away and that sucks.

I know, I know....be patient.....this is temporary......things will get better........but I'm exhausted, frustrated, and I want more then anything to see her smile and laugh and be happy.....that's all I want.

......sorry, I needed to bitch......I actually feel a bit better having written this......weird.

OK....2 doctors appointments tomorrow and Herceptin Friday.

Commercials that are plain WRONG

There is one (there are several variations) where they show a poor person suffering from some lung disease moaning and literally gasping for breath obviously close to death, in agony and blaming cigarettes.


These adds are a slap in the face to everyone who has ever watched a real live loved one go through exactly that horrible gasping which was soooo unbearable to watch. Not to mention, not everyone who dies like that does so because of cigaretts......ever heard of asthma?, COPD?, emphasema?


So congratulations for letting those of us with such a disease having nothing to do with cigarettes SEE the horrible death we fear our whole lives....one which is all but inevitable on a daily basis.


As for the "smokers" you want to reach, you aren't reaching them! YOU ARE NOT REACHING THEM! They are young or healthy now and could not possibly care less.....they laugh at those sick commercials.


My wife has metastatic breast cancer (metastatic meaning it has spread to other organs including the lungs in her case), she had to watch her mom die exactly as in your snuff film of a commercial, and now thanks to you, we must re-live it several times a day, every day through your sick commercial.......and we both must fear our own mortality from my asthma and she from her breast cancer and envision it not just in our heads, but live on TV and often.


Gee Thanks NYC Health! You are far more sick then the poor suffering people you portray and villify. Your commercials hurt more people daily then they will help ever.....quite honestly I doubt they will help anyone.


Oh and if I have to hear the American Cancer society sing Happy Birthday to itself one more time I swear I'll throw a brick at the TV.


Nuff Said!

Healing

Let me start by saying, I'm going to probably babble on and on in this post. I'm tired, frustrated, and a bit loopy right now...

I thought T's healing from surgery would be lots of pain meds, lots of sleeping, and me taking care of everything and making sure she ate...I love taking care of her as much as I worry I'm not good enough at it.

The pain meds do nothing. My poor girl wakes up in so much pain she actually cries out, or worse doesn't make a sound just holds her breath. I haven't been able to get her to eat much because.....well.....it's hard to eat when you don't feel well....I understand that, so I don't push.

The pain has me worried. She has a drain in, but not much is coming out of it.....maybe that's a good thing....what the heck do I know? I know we are calling the doctor! I want her to check her out, make sure everything is "normal" and maybe give her something better for the pain.

Nothing is worse then seeing someone you love in pain.

Cancer is a word that strikes fear in everyone, and yet.....the real thing is sooooooo much worse then your worst nightmares. No one talks about the many crazy side effects, no one tells you about the pains, the meds, the effects, the permanent vs. the temporary, I worked in a cancer lab for 10 years and I had no idea.....no idea, what all those positive results that crossed my desk meant for the poor person who's name was printed on it.

Everyone thinks you should be happy when chemo is over.....they don't know your scared of it coming back. They think you should be glad surgery is over, they don't know how horrible and painful the recovery is, not to mention the emotional part of it all.....loosing a breast, reconstruction if you choose. We have weeks before radiation starts, some say it's horrible, burned scarred skin, that hurts like crazy, others say it's not bad. What will it be like for T? I'm scared, and hope that she is one of the people who it will not be so bad for.

And when treatment is over everyone will be happy and congratulate us, and say you won, it's over.....but it's never over.....fear of it coming back will linger in our minds.....but I choose to believe she will beat it and outlive me. That was the deal...LOL

I think I want to try and get a job standing up for or helping cancer patients in some way. Help them raise money, pay bills, and I maybe put more info out there about what it's really like...from a loved ones perspective anyway.

I love my girl...this has changed me.....made me a better person, I think...I hope.

Quick Update

Surgery went well, she's OK, but in a LOT of pain and none of the pain meds seem to be helping much at all......I think they are discharging her today regardless...I'm off to the hospital again now.

(a longer better update to come when there is time and I'm less exhausted)

WOW

T's surgery is in 3 days......3 DAYS!!!......freaking out one minute and holding it together the next. Keep telling myself this will all be OK......rough recovery coming her way....at least 6 weeks......and the weekly IV's will continue and radiation AFTER recovery still to come.

Feeling overwhelmed, but I also, really feel deep inside that she will beat this!

Send some good vibes our way. It's going to be a LONG day in the waiting room.

Much Love,
Kat

Surgery VERY Soon

Surgery in just over a week. T is scared as expected about the physical aspect mostly. I'm scared of both the physical and the emotional, having previously worked as a surgical coordinator, the surgery scares me a little, because any surgery is a risk.......but more I'm worried about the psychological effect that probably won't completely hit T until after surgery.

A full mastectomy, even on just one side is no small thing to deal with. Our saving grace is that the reconstruction surgeon will at the very least begin reconstruction at the same time. This gives me some peace as T will not have to ever see herself with just the mastectomy scar, which can look quite brutal. The scar with immediate reconstruction will much easier to deal with. It will still look brutal at 1st, but better as time goes on....getting T though that time will be hard as she will no doubt worry the scars will not heal as well as they will.

This surgery is WAY WAY different from people who have cosmetic surgery (increase/decrease the size of their breasts) to simply change their appearance. Those people have more skin and tissue to work with and the operation is significantly easier and has a much faster recovery and less pain....or so I'm told by a cousin who had a boob job.

I have one big hope with this, and that is that they can do the reconstruction in one shot, which may be possible and is the plan, but the surgeon won't know until they are in the thick of it. The amount of skin and tissue they have to work with, or without will be the deciding factor.

We are told because it's a complete mastectomy AND reconstruction the recovery could be anywhere from 4 to 6 or even 8 weeks and quite painful in the first few weeks.

I'm scared for her......admittedly more for the psychological effects then the physical ones. I love her more then anything, so for me, I could have cared less if she choose reconstruction or not. My love and desire for her will not be effected in the least. I just want to grow old with her. I only want the reconstruction because I know it will make it a bit easier for her to deal and heal and feel whole. I could be wrong, but I don't think she could handle it without the reconstruction.

As some of you may know, I have asthma, which is WAY worse when I'm stressed out.....been waking up hardly able to breath and coughing my lungs out. The only thing that seems to help besides the inhalers is the left over xanax I have from many years ago that the doctor gave me when I lost the baby, and never used much of then.....that and hot coffee keep me out of the ER for my stress induced asthma attacks.

I think a lot of it has had to do (in recent days) with us having to and completing our Wills. Had to be done realistically, but was hard. I like to just think positive about all this and plan for a long future together. Thankfully, that will be completed today at some point thanks to the help of some dear friends, and we can file them aside and be done talking about all that.

Perhaps my stress level will get a teeny bit better, so I can concentrate on T more, although until she comes out of surgery, I think my asthma problems will persist.

I try to stay positive and we have both taken to doing some things separately with friends to occupy our minds. One friend is even taking T's surgery date off to come sit with me in the waiting room while T has her surgery.....how freaking awesome is that!

OK, I need to get a move on now....lots to do to get those wills finalized today and I haven't had a thing to eat yet.....not that I can;t stand to loose some poundage.....LOL

Like I said, trying to keep my humor in tact and stay positive and I must say, I really do feel like everything is going to be OK.....she still has to get weekly IVs of Herceptin to keep the cancer from coming back for many more months, and radiation on the distant horizon (after full surgery recovery).....but that's all going to do good things........think positive thoughts for us..........later friends.....

Short update

The Insurance company FINALLY admitted they were wrong and is now paying their part of T's medical bills. It was one heck of a battle and I won it for us! Now we can concentrate on T's health and happiness.

Scans looking better although confirmed we started at stage 4 cancer......surgery in next few weeks.....think happy thoughts everyone.

Sorry haven't blogged much....been emotional, and unable to blog about all that just yet......will update again after surg. in 2 weeks.

Some Victories Today

Victory Number 1


Today is T's Last Chemotherapy!


Victory Number 2

T's scans show much improvement all around.....what was in her lungs is no longer visible, which was our big concern as the tumor on her breast will be removed surgically as will the lymph nodes under her arm.

Next step.....1 more scan next week and then a surgical consult the week after......surgery, then radiation.

She has to continue weekly IV's of one of her non-chemo drugs for the next year through all of this, although they may eventually be spaced further apart after the next month or 2.

Some of the side effect's will take 6 months to a year to get better, but we're headed in the right direction.

Victory Number 3

The Health Care Advocate for the State of CT, or rather his top employee, "M" and I, and our wonderful Oncologist, Dr. H, her billing manager G, called United Heath Care OUT on their lies. They claimed we and the doctors never sent them the forms they needed to process this claim and tried to say it was pre-existing. She also tried to say nothing was denied, but "in-review"

WELL.....

I had gotten copies of the flat out denial letters they sent Tina's doctors from G, scanned them in and sent them to her and cc:ed the Advocate AND the employer's liaison to UHC. Caught!

Dr. H called them herself twice and documented  who she spoke to and when and that she had made it perfectly clear this was not pre-existing.

G, had copies of all the forms she had sent to them (as did I) and copied and sent them again along with a new form faxed to her AND a copy to the Health Care Advocate as did all of T's doctors, making it clear that the UHC lady was a liar again.

Let me mention again how awesome the Health Care Advocate, M, was and is....she set it up so that ALL correspondence regarding T must be sent by email for documentation purposed and cc:ed to her, me, the HR liaison for T's employer to the insurance company......so when she lies or does something half @ssed, the Advocate and I could call her out for all to see.

Bottom Line, T may continue her care with HER doctors going forward and her claims will be processed.

Mind you, I'll believe they will pay those bills only when I see a check has been issued to her doctors and not before, because that UHC lady is sneaky. Thankfully the Advocate has her number and our back.

Sooooo relieved, I can't begin to tell you how many nights sleep I have lost over all this in the past month.

Special Note

Tina's doctors and their staff have been wonderful to us....they care for T and fight for her....and they even share in our joys at the small victories along the way.

Today is a GOOD DAY!

UnitedHealthCare Doesn't Care about Cancer Patients

I was starting to feel optimistic.....still scared, but optimistic none the less....2 chemo's to go and scans to be booked, surgery consult and set up, surgery, radiation...etc.... Inexplicably, the scans have not been ordered, I suspect the insurance company is not pre-approving them, which is required before they are booked. UNITED HEALTH CARE IS HOLDING UP THE TREATMENT OF A CANCER PATIENT WHERE TIME IS OF THE ESSENCE! 

United Health Care has not paid a single dime to our oncologist in the last 4 months, we were called into a billing office and told her treatment might have to be moved to the city hospital because although she has insurance and CANCER, they believe (I shit you not), that she got insurance knowing she had cancer in order to screw over United Health Care by making them (a medical insurance company) actually pay for someones medical bills. 

Although all our doctors have provided them with all T's past medical records and have even called to tell them, this is, in fact, is NOT a pre-existing condition, UHC say they believe that it was anyway with admittedly no documentation what-so-ever, and so will continue to hold up all her claims indefinitely, which will prevent her from getting the best medical care available which she is entitled to and has been paying for. By the way, There is no evidence of a pre-existing condition because, THIS IS NOT A PRE-EXISTING CONDITION!

How outrageous of us to expect United Health Care to pay their insureds medical bills. How dare one of their customers have the audacity to contract a life threatening disease while insured by them. United Health Care is not only not upholding their part of their contract with their insured, they are in-fact endangering her life. To call this disgraceful is the understatement of the year!

So, in addition to fighting cancer we now have to fight the insurance company in hopes that they actually do their job! 

I've got her doctor calling the insurance company again, I've contacted the insurance commissioner, the CT Labor Board, and the CT Insurance Patient advocate. I should have an official case number soon. We also have being 100% right on our side. This was NOT a pre-existing condition you f#cking morons.

I have no doubt we will win this fight, because we have right on our side, but why do we have to fight this battle at all? Isn't dealing with a life threatening cancer enough. Thanks a lot UnitedHealthCare, for nothing.

Oh and thanks for having your customer service department refuse to let me speak to a supervisor and also treat me  like a criminal when I called to inquire why T's medical insurance was not paying her medical bills!

I'm pissed and worried that these criminals will get away with this....well, let's call it what it is, a crime!

Happy New Year

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