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!

Our Oncologist is leaving...sigh

OK, I'm just going to jump right in with a Cancer Update.

Well November is fast approaching, when T's heceptin IVs were supposed to end. The doctor was consulting specialist about what pill to give her for the next 5 years as the one most people end up taking (Tamoxafen) only works on women who are estrogen positive, which T is not. Meaning that for those people, the cancer cells attach to the estrogen receptor and the Tamoxofen turns that receptor off.

T is her2neu positive, and there is no pill for that, that can be given without chemo medicine at the same time......sooooo, for the next 5 YEARS we have to go to continue to go to the oncologist every other week for about 4 to 5 hours for premeds (Steroids) and herceptin via IV.

THE BAD NEWS: T's oncologist told us that because her husband can't find work in CT, she is moving out of the state. She saved T's life and now she's leaving and we have to trust a different doctor to continue her care......we both burst into tears. She hugged us both and told T she loved her and would continue to monitor her case, which took some of the sting out of it, but still! THIS SUCKS SO MUCH!!!!

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Sorry I haven't done one of these updates in awhile.....life's been hectic to say the least. Tina's working again, I'm working again. We hardly see each other Monday through Thursday as she works 1:pm to 7:pm and I work 4:pm to midnight. We have a new puppy, Apollo, who I swear is possessed at times and adorable.

Loving my new job at least....technically, I'm a temp., but I should get a perm position as soon as they have a budget for us as we are a new department in the hospital. I don't mind the drive to New Haven either....oddly the ride decompresses me.

Glad to be back at work....my bank account run-eth dry as a bone....LOL....time to replenish the savings I used up this past year.

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.

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.

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!

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

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!

"I wanna newwwww drug..."

"....one that won't make me sick."

Sitting in chemo room with T as I write this. She's been REALLY sick as of late coupled with morning her mom and now fully understanding all her mom endured during her treatment has been a bit too much to take.

Done with the 1st set of chemo meds and now starting Taxol and Herceptin for the next 8 weeks and treatments are EVERY week now.

Scared sh!tless about how she will react to the Taxol. Tina has a little neuropathy in her hands already without the Taxol and the Taxol is known to cause or worsen that side-effect....can't catch a break.

They SAY the nausea should not be as bad on this new drug, but the new drug has it's own set of scary side-effects...neuropathy in hands and feet being the worst on the list.

Oh and did I mention these meds make menopause worse......wicked hot flashes! Poor T goes from blazing hot to freezing cold and back again in minutes at times.

As for me, I'm loosing my mind at times.....hard to watch and not be able to do anything but be there....and by hard I mean sometimes I want to scream and hit things. She sometimes out of pain, sickness, grief, frustration and 100 other things will just curl up in a ball and weep uncontrollably. Rips my heart out.

I keep saying to her and myself that in 6 to 8 month or so, this will be over.....but it's little comfort.

That is all for now.....that's enough

Adriamycin and Cytoxan

Friday was round 3 of this little cocktail of chemotherapy drugs for T.......1 more to go in 2 weeks and then.....

....and then we change the drugs and see the surgeon to discuss what comes next.

1. surgery, reconstruction, more chemo, then radiation
2. surgery, more chemo, radiation, then reconstruction
3. more chemo, surgery, reconstruction, more chemo, then radiation

I'm thinking option 3, but we shall see, depends on what the surgeon thinks.

T is having a hard time....cabin fever. We had company one night last week which was really nice. T's friend S came over and we had home made pizza. It was good too!....and it was nice to have company.

Can't wait 'til tomorrow.....her brother is coming over with the girls.....this is the 1st time they will see Auntie Tina with no hair. She gets a kick out of the way kids react to her being bald. She gives them a big smile when she catches them starring. It's cute how amazed they look and the big smiles T gets in return.

As for me, I teeter between OK and pissed off at the world and everyone in it......about every 2.5 seconds. Trying to keep that under control is not easy.

Who Loves You Baby?

I do...

Hair Today, Gone Tomorrow

Had 2 whole good days where Tina didn't feel too bad. Even had company over one night and made it to the Oyster Fest for about an hour.

Today sucked! and tomorrow doesn't look good either. T's hair has started falling out in clumps and her scalp hurts something awful.

What's worse is she's shutting me out.....this has all been the most horrible experience ever......I do as much as anyone who loves someone going through this can do and sometimes she says she appreciates it and sometime, like today, she just shuts me out completely. She's been in the other room almost since the second I got up this morning and now it's night and she will no doubt fall asleep for the night.

I feel helpless, rejected, and worthless.

I've been alone all day in the living room.....looked up some things to help her scalp pain, but she won't even try them......she just wants to be alone in bed.......I don't think I've cried this much in my entire life combined....I was so upset I even threw up a few times, and if you know me, i never EVER throw up, no matter how sick I get.

Feeling miserable, rejected, alone, unloved......my life sucks right now.

I love her with everything I am, but what does it matter..........

Neulasta Shot - Mobile blogging

Wholly crap! This shot is supposed to increase her white blood cell count...but it also makes her bones ache, and makes her skin so sensitive to the touch...lots of pain.

On the plus side, I dragged a reluctant T back to the doctor today and they found the winning combo of anti-nausea meds FINALLY!

God I hope this makes the next round of chemo easier!

Another patient who did the same chemo meds said she was as bad as T her 1st round and that her 1st round was by FAR worse then the rest. That made me feel better about all this.

Until this afternoon T has been in so much pain that she spent the last 2 days mostly crying...broke my heart.

So glad she's feeling a bit better! Still to exhausted to do much, but at least she can eat now...yay!

A Long Day

Tried to get Tina out of the house for a couple of hours today....it exhausted her in every way.....physically, mentally, emotionally.....like much of this weekend, I'm sitting next to her while she sleeps quietly.

It has been 3 days of nausea that has tried her patience, her strength and her determination.....she is stronger then she thinks, although there is no way she can go to work tomorrow and be, not only on her feet all day, but lifting 50 lb. bags of food, and chopping and cooking all day.

I've watched her break down, I've watched her give up, I've watched her fight, I've watched her get angry, I've watched her laugh.....and now as I watch her sleep, I know that I love her more then I thought it was possible to love another human being.

Through all this...and we've only just begun this journey......I have been on an emotional roller coaster myself.....not quite the same as hers, but just as scary and with as many twists, dips and turns.....I have to deal with her crazy mood swings, but she has to deal with mine too...

frustration....I find myself snapping at people for no reason, yelling at drivers who cut me off like some kind of lunatic one minute, and laughing at myself for it later.....hoping my friends understand when I'm angry, or quiet or forgetful.....hope they and T know it's the frustration talking and that I don't mean half the sh!t I say sometimes....so take nothing personally, please.

Nothing frustrates me more then a problem I can't fix. She has to struggle through a treatment that will last for almost a full year and there is nothing I can do but watch, and try to help her through it as best I can.....it sucks when your an "I wanna fix it now" kind of person......and did I mention, patience is not a virtue I have a lot of.

.....tomorrow is another day.....

What I DO believe

I believe in Family and Friends

• The people who come or call because they love you.
• Who spend time with you because you mean something to each other.
• The people you have connected with so deeply that you could not talk for years, or see each other, or hear from each other.....and yet, when you do, you pick up where you left off, as if no time has past.
• The people who drop everything in a crisis and are there for you and know that you would do they same for them and have, and appreciate it.
• The boy you watched grow into a man, who you would die for, because you know their love is unconditional.....and you want him to know your love for him is also unconditional.
• The young girl you watched grow up to be a beautiful, smart, confident woman, who stops to hug you and excitedly shares what's going on in her life, and knows how very proud and happy you are of her and for her.
• The people you could fight with and tell to fuck off in one breath, knowing that if something bad happened you could still call them for help and they would come.
• The woman who spent the last 13 years with me, who has been to hell and back with me and loves me worts and all.

I believe we are born full of love and compassion and joy........most loose these gifts as they live......VERY few keep them and those few......well.....their capacity to love only grows as they live....it's a beautiful thing......it's those people I care about and keep in my life and love and BELIEVE in with all my heart.

I believe in the people I love, partly because they believe in me......and hope they know how very much I love and believe in them.

Spending time with THESE people is ALL that matters....in good times and bad.

I Can Feel the Love

It's past midnight, Tina is sleeping next to me and I am beyond words.


Last week T's cousin cut her long beautiful hair into a cute short style and dyed it blond in preparation for her chemotherapy. She figures that until it falls out completely, she may as well look like a bad @ss for a few weeks. While we where there, her cousin suggested getting all the cousins together at a local bar before this all begins and we added some of our closest friends who are like family.


Side story, when T's mom went through chemotherapy she gave T her hair to donate, and T couldn't bare to part with it and had been growing hers to donate to  replace it, soooo....when we cut Tina's hair it was long enough to donate, which made her very happy.


Anywho, getting back to the night out.....there was such an overwhelming amount of love in that room. At one point we all joined hands and several cousins voiced their hopes and prayers, there were many many hugs and kisses and just a warmth I can't describe.


As if we weren't touched and overwhelmed already..........Tina came to me in tears at one point because we discovered that one friend's dad who is going through his own personal cancer hell and hardly knows us wants to help...Very overwhelmed!


REVISED: ....and that our friends who are on the board at our local G.L.B.T. Center want to have a fundraiser for T to help pay for her treatment. How amazing is that?!?!?! .....yeah well, that's not happening anymore for various reasons....sigh!


Thankfully a few friends HAVE rallied around us and visit and call and email and text their support and concern.....THAT means the world to us both. Tina's family might pick up the ball and do a family fundraiser soon.....her family, especially the Italian side have been wonderful to say the least. It's kind of beautiful.