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.

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.....

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!

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.

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.

Support

T and I were invited by a very special nurse to our 1st educational support group. T and I are both shy about going to things like that.....maybe "shy" isn't the right word, but you know what I mean.

Anywho, it was a great experience and I hope we go to more together and individually. There was a nutritionist, a physical therapist, and a shrink. The physical therapist was borrrrring and a bad speaker, but the nutritionist was great and the shrink was good too. The people we met were very nice also and I wish I had exchanged emails with a few of them. I'm sure I'll see some of them in a doctor's waiting room or maybe even another meeting....that would be nice.

There was something.....comforting?...about being in a room with a bunch of people who completely understand what T (and I) are going through. There was a mix of patients and loved ones in this group. There was one lady there to support her niece. Her, I'd like to keep in touch with. We had the same attitude about all this.

Something else really good came from this meeting. One of the things the shrink brought up seemed to affect us all. It was about support and telling people what you really need. Everyone spoke up about how the people in their lives reacted or didn't react. How this experience lets you see the people in your life through new eyes.

Those that are very supportive that you never expected. I have an old friend from high school who I haven't spoken to since who has made a continuous effort to contact me via Facebook from time to time. She has breast cancer, but is further along in her treatment then T.

Then there are those that you expected to be there, but haven't been.....sometimes you discover that certain people aren't worth the effort and you just cut them loose.

Everyone did make 1 very important point though....about the people who are in our lives that we DO know care, but have not been there for reasons we can only guess......perhaps they are scared they won't know what to say, or afraid they will disturb T while resting, or just don't know what to say or how to be. They said you should TELL those special people in your life what you need from them......so we've started doing that.

I can't speak for all cancer patients and their families, but for us the answer is simple. Be who you've always been. Assume we always want you to call...to text....to email...and most of all TO VISIT. Don't be afraid to do any of these things, any time.

There will be days when you call, text, or email and we will say, "not today".....but don't let that stop you. Be persistent. There will also be days we have to cancel last minute because we never know when the nausea or exhaustion will hit hard, be understanding......we hate to cancel at the last minute too, but sometimes we have no choice. Also understand that we can only handle 2 or 3 people at a time in our tiny home, and don't want everyone visiting at once anyway. Having company on a few days with different people is way better then having a lot of people all at once and being alone the rest of the time.

It worked, by the way, telling the people we care about what we need. Several friends have already called, emailed, texted, and visited and others plan to next week and regularly. YAY!

I love you guys....you know who you are.

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Next chemotherapy is tomorrow.........here we go again.........I love you baby!