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?

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!

Anxious

CT Scans Wednesday, then not seeing Surgeon until a week from Thursday.

The questions are....

1. Has the tumor shrunk enough to do surgery yet? or do we need more chemotherapy 1st?
2. If it is time for surgery now, will it be a lumpectomy? or will they remove the whole breast?
3. When we do, do surgery, will they be able to do reconstruction at the same time?
4. ....or do we need more tests/scans?

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

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.

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.