Thoughtful, thoughts rattling around in my head

If a miracle happened and I won the lottery (never gonna happen, but IF)...I would travel from one oncologist to another and give money directly to patients with crappy insurance or no insurance. I would change the world 1 person at a time.....

Side Note: There was a little old lady having chemotherapy in the chair next to T's today. She was kind and sweet and alone.

It made me so sad to know that she was going through that alone....and still she spoke kindly to us, encouraged us to hang in there, and when she left, she offered Tina her blanket as it's very cold in the chemotherapy room. I make a point of introducing us and talking to whoever is near us, when we go into that room.

It's a room of strangers who bond in seconds over a common enemy....cancer! Everyone is sweet and kind to each other in there, because they know what is and is not important. The rest of the world outside is oblivious.

Can you say nausea, boys and girls?

Poor T had a horrible day of really bad nausea. She's been so sick, eating and drinking has been really hard for her.

When we got to the doctor, they took one look at her and hooked her up to an IV to give her fluids and anti-nausea meds, that didn't work. The fluids helped a tiny little bit.....I expect we will go back again tomorrow to do that again, and the doc definately wants to see and hydrate her again Friday.

I've never seen T this miserable and sick.....it makes me feel helpless and yet grateful that I can be here to take care of her all at the same time. I don't know what she would have done if I wasn't here....not that I actually did much...
...tried to get her to eat and drink
...drove her to the doctor
...ran a few errands

 I wish these 1st four chemotherapy treatments would fly by.....1 down, 3 to go.....after that, they drop the heavy meds making her so sick and switch to meds she will tolerate way better....or so they say.

If that's all not enough, we have to worry that her work will screw her over and she'll loose her job because she's sick, in spite of the fact that we have doctors notes. They are making this way harder on T then they have to......people are selfish and evil sometimes....got the name of a good employment lawyer from a friend, just in case....hope we don't need him though.

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.....

Chemotherapy- Not for the weak

THE DAY OF TREATMENT:

Let's see......we got there, everyone was really sweet and it all went smoothly. I brought T's laptop for her to distract her....
they checked her blood counts, with a finger stick,
gave her, her EMENS pill (it cost $356.40 for 3 pills). She takes it for 3 days with each chemo. along with another drug that's a steroid also for 3 days.
IV of anti-nausea
then they hung all the chemo. drugs

She felt good through the treatment...made friends with an older couple who was there too

In spite of the meds., nausea kicked in, in a big way around 6:00 pm. My poor girl was praying she could throw up for a few hours, but the meds didn't make that easy.....by 8 she was throwing up  and continued for another 2 hours. Thankfully after that, exhaustion kicked in and she slept through the night.

DAY 2:

Nausea is back, but not as bad...meds in.....ginger tea made.....breakfast being eaten with a healthy dose of saltines. With hope she'll start to feel better and better as the day goes on......exhaustion should hit her hard they say today or tomorrow......we'll see....maybe the steroid will help with that.

Just want her to feel better

1st Chemotherapy Today!

Headed to T's 1st Chemotherapy in 15 minutes. 


Time to fight!

I might try mobile Blogging at some point during the process.

Everybody think happy thoughts and send some good vibes our way!

Donate

Tick Tock

Tina's 1st chemotherapy this Friday got changed from 9:am to 1:pm and we're gonna be there for like 3 or 4 hours. They said the 1st 2 sessions would be longer.....they weren't kidding.

Waiting is freaking us both out.....just want to see what it will be like, how she'll react, how she will recover, how will she feel come Monday when she has to go back to work.....we shall see.

They are giving her the stronger of the 2 choices of chemotherapy for her situation. It causes more nausea then the other kind of chemo. so they said they will be giving her an IV drug for the nausea in addition to the pills we got already.

I spent all day today cleaning to make the apt. germ free by Friday, but I have so much more to do. We made chicken soup late tonight....I'll finish it off tomorrow......

I have so much to do tomorrow.....laundry with comforters, sheets and everything, bank,and a couple of stores....then finish off the soup, put laundry away, and more cleaning of the bedroom and kitchen.

I have to be done tomorrow because Friday T's gonna be a basket case waiting for her 1st chemotherapy....no clue how I'll be.

OK, off to bed....I need some sleep...getting up with T at 4:45 am every morning is killing me. I usually try and get a little more sleep after she leaves at 5:30 am, but I have shit to do and get done before she comes home at 3:pm-ish.

What to eat and what not to eat, THAT is the question.

Anyone out there have any experience or knowledge about what is good to eat during chemotherapy and what is good to avoid?

Tina and I have both been doing a lot of reading on the internet. I've found there is a LOT of misinformation out there, so for now I'm sticking with WebMD .

Can anyone recommend any other reputable websites that we can go to to learn more?

We plan to consult with a nutritionist soon, but would still like to read more for ourselves as chemo. starts THIS Friday.

Stress

Stress and worry of the unknown really f#cks with who you are at times. This is what a bad day is like...

When T is scared,and she's scared sh!tless about her 1st chemo this Friday and having all those chemicals running through her body.....she becomes very irritable and critical.

When I'm scared, and I am, I try to hide it from her mostly....and just yell at every idiot driver on my way to the store.....i take it out on strangers who can't hear me.....I try to ignore the nit picking she does out of fear and stress, but sometimes it gets so bad that I have to speak up and tell her to stop because she makes me feel that I can't do ANYTHING right.

She gets it immediately, and stops for awhile......but also then feels bad because she knows she does that......then I feel bad for making her feel bad......sigh!

I love her so much I hate that she's going through this.....I hate that I'm going through this......I hate that I spoke up for myself the other night and made her so sad on top of the fear she's already feeling.

I hope that once she has the chemo and sees exactly how she will react and feel, that it will be less scary and we can fall into a routine with it.....and maybe relax enough to enjoy the time between treatments more.

In Port

OK, so yesterday was T's day-surgery to put a port in her chest so she can start her chemo next Friday. Our surgeon was running about 3 hours late and poor Tina was having panic attacks all day. Finally she had a REALLY huge one, said I'm pulling out my IV and going home. By then I had already asked for anesthesia to come and give her SOMETHING......within 2 seconds of them injecting her, she was comfy and happy and falling asleep....whew!

It was actually kinda funny once she was OK. The doctor came out of surgery just then and apologized for running late. Told T, "so, I hear you tried to make a break for it"? Anesthesia girl (didn't catch her name) was smiling and went to the OR to prepare. The doc was very sweet to T and commented on her newly short and blond hair. I told her T wanted to be a bad @ss for a few weeks. This made the doctor laugh and she said, "I like that attitude!" The doctor was gentle and touched T's arm when she talked to her to let her know she actually cared. I really like this doctor.

After that ordeal of waiting and poor Tina sobbing most of the day, they took her in and relieved I trotted off to the waiting room. Relieved lasted about a second and worry set in. Thankfully a particularly talkative woman also waiting kept me distracted, and I her.

The doctor came out about an hour later and told me everything went great and Tina was fine and in recovery and that I could see her in about an hour after they got her a quick x-ray. I was so grateful I hugged the stuffing outta the doctor and she seemed truly touched. I'm just not used to doctors with a heart....LOL

Did I mention her port is 1000 times better then her mom's was. It's smaller, moved closer to her shoulder so it should be not too visible with any kind of shirt. She's tender but feeling OK.

No clue how the poor girl is gonna be able to work tomorrow or for 7 days straight until her chemo.....sigh.

On a Mission

Been trying to raise money for our crazy out of pocket  medical bills......not that anything has worked so far.

So LATE the other night I created a "Donations Web Site" . Twittered it out and Facebooked it out too and even put it on a traffic exchange and spent hours surfing for credits.....so far 2 people donated.

Not feeling too hopeful about this one, but it's worth a shot. I asked everyone on twitter and facebook to share or re-tweet it, which I hate doing. Asking people to post or tweet something for me, that is......but pride went out the window a long time ago. A lot shared it at least. Thanks for those that did. Means a lot to me.

I'm going to try posting the link different days and times of day also.

If anyone is actually reading this blog and you have a blog yourself, would you consider writing a post about this or placing a link on your page? ...and email me and tell me, if you do with your blog address so I can link back to you. I'm going to add Links to Friends and supporters in the sidebar this weekend if not sooner.

Headed to hospital to get Tina into surgery to put her port in her chest so they can start chemo next week.....

Feel free to follow me on Twitter at http://twitter.com/katpop

OMFG!!!!!

Went to the pharmacy to pick up some medicine for T's 1st chemotherapy and almost fainted when they told me the price.

...are you sitting down....

$356.40 for THREE PILLS!.....I sh!t you not......and then I found out she has to take this medication with EVERY chemo. treatment! (((THUD!)))

I found myself sobbing in the car, trying to get a grip so I could drive.

Called the doctor and asked them to call me tomorrow so I can ask for samples, if they even have them for this kinda drug.

Then a moment of WHEW! I looked up T's benefits and discovered there is an out of pocket max for non-covered and covered drugs.......WHEW!!!

All these emotions from what was to be a quick stop at the pharmacy on my way to the supermarket.....I feel like I ran a marathon.

I keep telling myself everything is going to be o.k., but I find myself on an emotional roller coaster 24/7

Scary Day Tomorrow

Tina gets her port put in tomorrow. I know it's just day surgery, but still......waiting and not knowing things scares me. We have to be there at high noon. Poor T's gotta starve until then, and she's worried it will hurt after because....well....heck it's gonna be in her chest under the skin for like a year.

Her mom had one and said it didn't hurt. I sure hope she was telling the truth and not just protecting us from worry back then.

If that's not scary enough,  our beautiful new baby niece is having serious surgery to address a birth defect. A surgery so rare, her surgeon has never done it before.....I'll be watching my texts from them at a different hospital all day. Kids go early to surgery as a rule, so I hope she's out and well before they take Tina in. Just sad that we can't be there with them through this.

There I go crying again....seems all i do is cry these days. if you knew me, there was a time that no matter how hurt I was I could not shed a tear, especially in any one's presence.

....gotta go take a shower and run around a bit now

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.

What I DON'T believe in

"They" said.....
trust in God
Everything happens for a reason
believe
pray
God never gives you more then you can handle

What kind of fucking advice is THAT?!?!?

I told my family I was gay and they disowned me when I was 21
I lost a baby in 2005
My wife had a meat scale fall on her head and have VERY painful surgery
I lost my job for something I didn't even do
I watched my mother-in-law slowly die
and now my wife (my world) has been diagnosed with cancer
I've struggled all my life

Trust in God you say? Why on earth would I trust in someone who is all powerful and yet never lifted a finger to help me? Would you trust in a human being who watched you suffer and had the ability to help and didn't?

Everything happens for a reason. Are you kidding me? That's just to stupid to bother commenting on.

Believe? Pray? i did more then that! There have been times when I curled up on the floor sobbing and BEGGED! He did NOTHING!

God never gives you more then you can handle. Really? That makes sense to someone? Does that make sense to anyone? By that logic, it would be O.K. to torcher anyone constantly because it wasn't more then they "could handle". That's not just crazy, it's sick!

How does one prevent becoming bitter when I see assholes, who are evil and selfish and care for no one but themselves get ahead......no thrive.....get all they want out of life.....with no consequences for the horrible things they did to get there.....not a one.

So this God I'm supposed to believe in and "trust in"...
...is able to help but doesn't
...only torcher me enough to not kill me physically
...but I should accept it because he has a "reason" for doing it

Either this god you all love is indifferent (the OPPOSITE OF LOVE), or a sadistic bastard. Either way why would I love and worship, or trust and believe in him?

If a human being did these things would you worship THEM?

All I've learned is that.....If you knock someone on their ass enough times, eventually they will stop trying to get up! 

.....and yet here I am....fighting for what I love AGAIN! Always fighting.....loosing a little of myself each time.

Apparently this God of yours hasn't finished teaching me the lesson yet.....hasn't taught me to stop getting up every time he mercilessly throws me to the ground.

FUCK HIM!!!!!!!!!!!!!!!!!!!! FUCK YOU YOU FUCKING FUCK!

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.

Going Over Your Head Mother F-cker!

Going over the heads of the evil local management who was not only UN-helpful to my girl, but actively tried to screw her over....and threatened to fire her if she missed too many days of work for chemotherapy, etc...ACTUALLY WORKED! (Thanks T.P. for the advice)

I spoke to corporate and explained how she was being screwed out of FMLA, Short Term Disability, and Long Term Disability even though she qualified for both MONTHS ago, and that they were preventing a cancer patient from getting treatment that could save her life and threatening her job due to her illness.

I didn't threaten to file a lawsuit, I just literally begged for his help, but I'm sure THAT was a big motivation.

I even explained that a very small scheduling change could make it possible for my girl to work through her chemotherapy and reserve her Short term Disability for surgery and radiation in aprox. 6 months when she will need it.

The corporate guy, who was an angel (whatever his motivation) assured me she would be taken care of.

Well, I've never seen such a complete turn around in my entire life....suddenly she has job and insurance security and they will honor a 4 day work week for her during treatment (for which we provided a doctor's note), and if she needs extra days off, all she needs to do is let them know and she can have them and need not worry about loosing her job or ins. due to dipping below 30 hours.

I don't think this will make her HR person who SHOULD have called corporate herself and arraigned for all this as that is what HR is supposed to do will be too happy about this, but F#CK HER and the horse she rode in on!!!

We have soooo much to worry about, at least now we don't have to worry about her job or her insurance too anymore.

WHEW!!!!!!!!

Ever feel like you just got punched in the stomach?

Saw oncologist with the wife today.....they can't tell if the nodes in her lungs or the lesions in her liver are cancer or not because they are too small to diagnose or biopsy.....which means the doctor can't tell us if my girl is terminal or not.

They do say that even if they are cancer the chemo and radiation will "treat" them as well. My hope is that her treatment will obliterate them, but we have to watch them.

Wholly crap!

Part of me is happy they are treatable and part of me is devastated that the doctor can't say definitively that she is NOT terminal......scared....angry....and so many emotions in my head and heart i could not begin to explain how i feel, think, am.

Chemo starts 8/27/2010....2 weeks

She's Radioactive

Did you know that a Pet Scan makes you radioactive for several hours?

Well, it does.....they even give you a paper to prove it was because of a test and that your not in posetion of radioactive materials to build bombs with......the paper is to protect you from arrest by cops and so you can get through an airport....verrrrry interesting, no?

Tests and Oncologist Apt.

Another day off for Tina spent in doctors's offices starting at 7:15 am....should be done by 3:pm.

I feel like the poor girl never gets a real day off anymore.

I Need a Miracle!

I'm so stressed and worried about so many things right now with regard to the wife's cancer, treatment, her job, her insurance, how she is handling everything.

I'm beside myself and feel quite paralyzed today.....although I am doing all I can I fear it won't be enough to make this as easy and stress free for her as something like this can be........LOL....i know, I'm nuts.

This is hard enough already without her work and other things making it worse. They say money can't buy happiness, but it can buy her health and well being and our sanity.......unfortunately, I lost the lottery again....LOL

If ever I've needed a miracle, it's now. Not sure how much more I can endure
Lost a baby
Dog died
Mother-in-law died
Wife has cancer
....and the entire world seems hell bent on making this as hard/impossible to handle and deal with as possible.

Asking for Help

With regard to my previous post, I contacted Corporate HR at my girl's company and they called me back right away, exchanged email addys, and he will try to help us out ASAP.

He also guaranteed me no retribution from local management for going over their heads. He will see to that personally. He will get some of his insurance experts etc together and figure out how best to help us in our time of need.

I feel good about this all, but will believe it when I see it. I asked for everything in writing when all is worked out which should not be a problem.

He said he does not want to deny a cancer patient/employee all the support and care they require, and he seemed very sincere. He even stayed on the phone with me a bit to assure me everything will be ok and that he will begin working on this right away and get back to me.

Heartless

My girl's employer is saying she doesn't have short term or long term disability and they are denying her the ability to sign up for short term or long term disability until November 2010........even though she qualified for it at 400 hours worked. She now has more then 800 hours worked and they are still making her wait until open enrollment in November 2010 because of a technicality we don't fully understand and they won't explain in terms we can understand.

Apparently you have a 1 week window to sign up for sort term disability at your 400 hours. She was never told this nor is it in the company handbook......we still don't understand why she can't sign up now being as she has more then met the requirements. Apparently they believe their employees are psychic.

So now she HAS to work through her chemotherapy no matter how sick it makes her, and if she has to call out sick too many times she has to worry about loosing her job and insurance completely......nice, huh?

As if Cancer, Chemotherapy, Surgery, and Radiation aren't enough to worry about!

Even with insurance this will be at least  $10,000 out of pocket not including medications etc...any millionairs out there wanna help?

Some Answers....More Questions....more tests

Overwhelmed to say the least.

The Cancer in her Right breast and right lymph nodes we knew about. There is also cancer in the lymph nodes near her collar bone on the right ride.

The scary unknowns right now are a few nodes in one of her lungs, which are suspicious for cancer and lesions on her liver which may or may not be anything......Ultrasound and Pet Scan to rule those out.

Oh and a possible cyst on her ovary which is a nothing.

Either way the treatment will be the same.....

• Tests 1st
• Consult with Oncologist
• Port-o-cath surgically implanted over her good breast to administer the chemo and stuff next week.
• Chemo for 4 to 6 months
• Surgery to remove just the big lump, the lymph nodes under her arm, and reconstruction all at once.
• Radiation 5 days a week for 6 weeks after that to make sure it's gone.

Her hair will probably fall out after the 2nd treatment so we may be going for the GI Jane hair cut sooner rather then later....eyebrows and eyelashes may or may not fall out as well.

Oddly I'm able to keep it together in her presence, as always i will fall apart tomorrow when she leaves for work....but I have so much to do.

My unemployment may or may not continue after I call them tomorrow, although I think it will continue until I find a job or it runs out in July of next summer....thankfully we have many friends and family who can pick up and take her to doctors if/when I am working.

So stressed out I can hardly deal with every day life, but I must. I wish I had the money to be able to stay home and take care of her for this whole next year, but unless lotto comes out (LOL) or Bill Gates becomes my new best friend.....such is life.

Today is the big day

We see the doctor at 4:45 pm to get all Tina's results and find out if the cancer has spread already or if we need more tests or if it's (we hope) JUST in her right breast and lymph node (where we already know it is).

We also, i think, will be coming up with a plan of attack with the doctor and setting up appointments with the oncologist, who is the same as the one (or rather, group) that her mom used.......THAT is a good thing....we have the best of the best when it comes to surgeons and oncologists.

We got to meet the staff in the oncologist's office already and loved them......fun, happy, upbeat and good at what they do.....it's also WHERE Tina will get her Chemo.....glad, no hospital....it's in the office with the nice staff we already met.

Tina is so scared she keeps having panic attacks, even more then usual......my poor girl.

I think once we know what we are dealing with AND have a plan.....i hope.....she will throw a switch inside and become the fighter she is by nature. Lone road ahead, but she can do it and i will do my best to support her and care for her.....I'm scared, protective and pissed all at the same time, sometimes.

FUCK CANCER!

Hurry Up and WAIT!

OK, turns out we will get some results from all the tests to see if the cancer has spread on Monday night......5:pm appointment....6 days.

I just want to hear that it hasn't spread which will mean it's managable.....sure chemo, surgery, and radiation, but a long life ahead.

If it has spread.......I don't even want to think about it.

Tests Tests Tests

Testing all day today to see if my girl's cancer has spread past her breast and lymph node...and by "all day" i mean ALL FREAKING DAY!

Starts with pre-meds at 1:30 am and ends with a bone scan starting at 4:45pm with a bunch of tests, medications and injections in between....ugh!.....there is literally something that has to be ingested, injected, or a place for us to be every hour.....sometimes every half hour....with one short 2 hour break during which she will be sleeping from all the meds and from which I will have to wake her to go to her last test.

....and the kicker....some of these tests take 2 weeks....that's 2 more weeks of not knowing if the cancer has spread.....2 weeks! 2 WEEKS!