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

My Stress Level

Even when I don't think I feel stressed out at any given moment, my asthma says otherwise.

I worry a lot, about everything. Been that way all my life......usually I have a good control of it, but these last few weeks, my asthma has been a nightmare....and a bit scary. Old Xanax that a doc gave me back in 2005 that I never took at the time is the only thing working. My asthma must be stress induced because the inhalers don't work well enough, but in combination with the xanax once, sometimes twice, a day keep me breathing. I need to get insurance soon, because I'm running out.

I always have a plan for something I'm not comfortable with, and a plan B and sometimes a plan C.....however, sometimes in life there are situations where you have to not care who you offend and just do what you know is right in your heart, consequences be damned.

An example of this is going full on after T's insurance company. I know getting state insurance officials involved pissed them off, but it was the only way to hold them accountable and make them do the right thing......after all, my wife's health and care is most important. The feelings or the job security of those trying to break the rules and deny her, her legal medical rights and treatment, are not my concern. My feeling is if you did your job right, I would not have had to call you out on it. It's not my nature to EVER mess with someones  living, but if your going to cost my wife the medical care she needs to live through this cancer, you bet I will do everything within the law to get her (my wife) the care she needs.

One of my best friends called me a pitbull when it comes to defending the ones I love.....all I have to say to that is D@mn right.

What they don't see or know is that when I am fighting for their rights, I am terrified I will fail or make things worse.....but I keep the faith that having right on my side, will get me through.....but in life, being right doesn't always mean you win.

My big stress not is T's pending surgery. I feel in my heart she will get through the surgery just fine, but I worry about the psychological affects of a mastectomy on her, so I'm grateful that reconstruction will either be completed or at least started at the same time during the same surgery. I believe that will make things easier to take during her recovery.

I'm not very religious, buy in my own way, I pray her pain during recovery will be minimal. I understand it will be the worst during the 1st 2 weeks until the drains come out, and most of what I've read tells me that after that the pain in considerably less.

I have a good friend coming to sit with me during her surgery next week....don't know if I will be good company in my state of worry, but I'm glad she will be there.

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!

United HealthCare Doesn't Care about Cancer Patients (Part 2)

...and the battle continues....made a teeny weeny amount of headway today.

I got the Office of the Patient Advocate of CT involved and she and I both called the head of HR at T's employer's corporate office, he got his staff involved and we got a big-shot at UHC care involved.

I got....completed...... and scanned a ton of documents and emailed them all over the place, and tomorrow I'm going to Staples so I can fax a questionnaire to all of  T's doctors asking them to complete it, fax it to the big shot at UHC and then mail it to the regular PO Box Addy on the form.

...then I will let the HealthCare Advocate, and everyone else I got involved know that I did that...

....then I will hold my breath and hope they pay the damn bills!!!!!

I am beyond disgusted with United HealthCare. They KNOW this is not pre-existing, and still they try and get away with not paying.

I feel helpless.....even as I try to help my wife save her own life and get the medical care she needs to survive, UHC is trying to get away with trying to deny her this, but they have no problem taking her money for this "insurance coverage".....what coverage?

I am just beside myself.....i sit and think in a daze for hours.........helpless, hopeful, doing what little I can.

If this continues to affect her care further, I will file the biggest most public lawsuit her employer or UHC has ever seen!

Why can't they just do the right thing? Why is this a battle? Isn't finding out about the cancer and dealing with all of that enough? REALLY?!?!?

This is their last chance to do the right thing.....and they better move fast.

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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Elizabeth Edwards

Tammy said it best...

I've been following her story since it was announced that she had cancer. As soon as it was publicly known, I assumed her husband would step back from the limelight, the presidential race, and tend to his wife, his support system, his core strength. 

When he did not, I began to count her days. And when he did not, I began to question his character. Before the rumors of any infidelity came out. I couldn't believe he was going to let her go through it alone. Who the hell does that to their spouse? 

Rest in Peace, Elizabeth

Wordless Wednesday

Tina with her mom June (who we recently lost to cancer and other complications).

Picture taken 2007

The Benefit was Awesome

To say the evening was wonderful would be an understatement. Thank you all so very much....words can't express our gratitude. We love you!

T's Benefit

This Picture is from Healthier Times

I'm sitting in the chemotherapy room with T right now.....thankfully we have Internet service this time and our laptops to help make the time go by (5 hours).

Tomorrow night is T's Benefit. I'm a bit nervous. T being the guest of honor means I'm gonna be in the middle of all of it with her, and I get very nervous in situations like that, I hope I don't embarrass myself or say anything stupid. I hope T can keep it together and enjoy herself.....after all, it is also a party.

We're both very overwhelmed and grateful to everyone coming and those that could not come who donated via our donation site at http://tinamarie.bbnow.org. We are also VERY grateful to her cousins and family who upon hearing T was diagnosed, immediately arranged a get together for the cousins and friends to just show their support and wish her well, and who within 2 months organized this benefit for T tomorrow night which involved a LOT of work and headaches on their part. They have done this all with enthusiasm and love and I could not possibly express just how much that means to us.

Wordless Wednesday

This Past Week

The Weekend

Had 2 friends come over Friday and had breakfast with another couple on Sunday, the weather was beautiful (60' in November!)....I could deal with this weather all winter...I'm dreading the cold weather coming.

It was nice to spend time with friends and be our old selves for awhile.

Chemotherapy Last Week

This week the 2 sweet little old ladies that I love to chat, were there at the same time as us. The one with cancer now, was just switching from T's original chemo. meds to the one's T's been on for 4 weeks now and was a bit nervous and scared.

It felt so good to be able to tell her, from T's experience, that the new chemo. was much easier to handle, especially as far as the nausea was concerned. We told her how much easier this cycle is compared to the last and I watched her visibly relax a little.

We did, however, warn her about the possible neuropathy....God, I hope she doesn't get it!

Her friend who comes with her every week also had cancer many years ago, so she understands and is a great support to her friend. I could listen to them telling stories of when they were young all day.

I hope they are there next week at the same time as us. When you have to be at the doctors for 4 to 5 hours it helps to have people who's company you enjoy there to pass the time.

Group

This past week, we went to a group meeting with other patients and their loved ones/care givers. It was kind of cool to talk to people and find that we've all had similar experiences with how this has affected all aspects of our lives....it was comforting in a strange way.

Usually, these groups are for patients only...so at the end we suggested they start a group for just loved ones and care givers....and agreed our meeting should be in a bar...LOL

I hope they do it though.

The Medical Stuff

The new chemo. is going well...the new side effects being dealt with OK...T is able to work 4 days a week now, with some pain, but still better then before.

At 1st the Taxol was a bit too strong for T's body to handle and she developed Neuropathy (nerve damage and pain in her hands and feet). So to make it easier to tolerate and keep the neuropathy from getting worse, they reduced her dose by 1/3, and extended her chemo. from 8 more to 12 more weeks and increased the frequency of her treatments from every other week to every week....the Neurontin is helping with the pain in her hands and feet.....doesn't take the pain away, but makes it bearable. Still we have to follow up with the specialist for the neuropathy in a few weeks to make sure it's not getting worse as this could be permanent damage to her body.

Her tongue has deep cuts in it still, from the previous chemo. (Adriamycin and Cytoxan) and now this chemo. adds a metal taste in her mouth which makes everything taste off.....so eating is hard....soft food with little or no seasoning is best. Although, because she has to take steroids the day before and after chemo. she is able to eat best on the weekends (she has chemo. Fridays)....so at least she has a few days where food may not taste right, but at least it doesn't hurt too much to eat. Needless to say, she's lost a lot of weight.

Watching all this helpless from the sidelines is killing me.

T's Benefit is in 10 Days

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Chemotherapy is working....YAY!!!

In spite of the hell that goes along with it, the chemotherapy is working.

It's going to be for 12 more weeks of chemo. rather then 6, but after the 1st 2 treatments of the new chemo. (not counting today) we've already noticed quite a difference.

In case you don't remember the 1st round, which was more brutal, made the lesions in her liver no longer detectable as well as the lymph nodes in her chest. It shrunk the nodes in her lungs a little and also shrunk the lymph nodes under her arm a bit.

This new chemotherapy we discovered today, not only works especially well on the large, dense tumor in her breast, it will also continue to work of the other suspected tumors in her lungs, liver, and lymph nodes.

I know we still have a long road ahead, and some scary side effects to deal with, surgery to plan, and eventually 6 weeks of radiation/5 days a week, but at least we know it's working. IT'S WORKING!

I'm crying happy tears as I write this for the 1st time in a LONG time.....YAY!