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.

Quick Update

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

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

WOW

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

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

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

Much Love,
Kat

Surgery VERY Soon

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

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

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

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

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

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

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

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

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

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

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

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

Short update

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

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

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

Some Victories Today

Victory Number 1


Today is T's Last Chemotherapy!


Victory Number 2

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

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

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

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

Victory Number 3

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

WELL.....

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

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

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

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

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

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

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

Special Note

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

Today is a GOOD DAY!

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?

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.

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