Sunday, June 3, 2012

On Edge

This coming Friday we see the doctor again and order new scans to see if our decision to stop all treatment was the right decision.

We stopped because we were not certain that the treatment was what was keeping the cancer away or not, but we did know that it was causing a lot of problems with Tina's health....permanent nerve damage, slow healing, and it was making her weaker by the day. We hoped that stopping would allow her to heal and grow stronger. That way, if there were a recurrence, she would be strong enough to fight and handle the medicine/poison.

I'm sooooo on edge now. Scared our decision was the wrong one. Scared the cancer might be back. I'm so nervous these days I can't sit still and I feel very alone in the world.

I've started guided meditation almost every morning (5 days a week) in an effort to control my nerves. I listen to Tara Brach's guided meditations and her voice in itself calms me, although my mind wanders throughout. I expect I'll get better at it, as time goes on.

We see the doctor in 5 days, I expect the scans to be ordered the following week, and results the week after that.

Send good vibes our way friends.

Tuesday, April 17, 2012

April 2012 - Going and Getting Stronger!

Things are going pretty good. No recurrence....treatment going well. The weird thing is I'm more afraid of a recurrence then ever....is this normal?

T has started working with a trainer at the gym who works with people who have limitations due to cancer & treatment. The effects are already showing. She seems to have more energy, and aside from some soreness in the she's doing really well. PLUS, having an appointment with a trainer, motivates her to go.

Really proud of her!

Tuesday, December 6, 2011

Update December 2011

Scans are clear......cardiac tests show minimal damage to my girl's heart, so treatment can continue.....whew!

Now scans every 3 months to check for re-occurrence and an echo on her heat every 8 weeks to check for damage to her heart from the meds...

...and we continue chemo every 2 weeks via IV (Herceptin & pre-meds).

Monday, October 31, 2011

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?

Thursday, September 29, 2011

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!

Tuesday, September 20, 2011

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!!!!

------------------------------

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.

Monday, July 18, 2011

Long Over Due Post

Sorry, I haven't posted in awhile.....we've been stressed out of our minds.

T's radiation is over....her Herceptin chemo. will continue through October, but it has few side effects. She will be returning to work soon. She's one tough woman, my girl!

My unemployment has run out and I still don't have a job, and I'm starting to get scared. I've sent out over 1000 resumes and nothing so far. I'm meeting with a temp agency tomorrow and hope they can at least get me some temp work until I find something full-time and permanent, with benefits....although, to be honest, I'll take whatever I can get.

The stress it getting to me.....not sleeping well.....when I do sleep, I have these crazy dreams.....I'll feel sooooooo much better once I have some stability.....income....savings.....a routine again.

Thursday, May 26, 2011

Good People...

NICE.....not sure how many radiation sessions T has left....somewhere around 25. Everyone is very nice (staff and patients). Hard not to bond when you see the same staff, patients and everyone's loved ones every day, 5 days a week......that part is actually kinda nice.

Crazy day today........already went to radiation with T, then we went to a service for a friend's dad who passed away. It was tough to go to something like this so soon after loosing T's mom....also broke my heart to see the grand kids quietly cry. They lost their paternal grandfather and their maternal grandmother in the same week.

Having a short break now, then getting our hair cuts down the street at T's cousin's shop, then going to a service for another friend who lost her mom.

Looking forward to hanging around the fire at my friend T's house tomorrow night. It's a weekly ritual for our close friends that always relaxes me and allows us all to keep up with each other. We laugh and tease each other and it's always a warm, funny, good time....I hope everyone can make it this week.

Tuesday, May 17, 2011

Technical Difficulties....please stand by...

OK, so it turns out T tenses up during radiation and also it's hurting her to be in the proper position because of her neck fusion. (She had to replace 2 discs in her neck with bone from her hip a few years back)

Anywho, tomorrow they will make her a new mold to sit in during treatments and re-mark her.....it will be more comfortable and allow them to radiate the right places. This is going to set her back a few sessions and extend her radiation........sigh

-------------------------

....on a totally different topic....we visited with my sis-in-law and the girls the other day....it was so much fun (as always)....the kids are just so sweet and lovable, I can't hear "auntie Kat" enough.....makes my whole heart smile....and sis-in-law is fun to chat with.....cracks me up......and has mad super mommy skills.

....that is all....

Sunday, May 8, 2011

Radiation

T's Radiation Therapy started this past Thursday. Going to the hospital 5 days a week for 6 1/2 weeks. We're told that around week 3 she will start to feel very tired and that it has a cumulative effect, meaning that as the weeks past she will feel more and more tired.

They gave her a non metallic cream to keep on her skin which already feels like a slight sun burn. The cream is as thick as Vaseline, so she will ruin some clothing, but what can you do? she can't even use any antiperspirants, because they all have metal in them and metal absorbs the radiation and would continues to radiate her.....(scary, right?)....so we special ordered a deodorant with no metal.

On another note, her Herceptin IV's were changed from weekly to every 2 weeks with a double dose. This was scary for us in that she has a reaction to Herceptin, so they have to pre-medicate her with IV benadryl and steroids and we were not sure she could handle the double dose. She didn't have a reaction the 1st time, but this week.....

....woke me from a dream to tell me her tongue was swollen and her throat too. I was freaking out on the inside, but kept mostly calm but assertive on the outside and told her to take a benadryl and her steroid immediately and that did the trick. Now I've got her drinking water like crazy to flush this crap out of her system. whew!

(In best Mr. Rogers voice, "can you say STRESS boys and girls?")

Sunday, May 1, 2011

We Planted a Pine Tree in the Woods

.........where we like to go walking when the weather is nice.

We went to an Earth Day Event the other day, and the gave us a free Pine tree sapling....soooo today, we went for a walk and and planted it, in a spot we will see it every time we walk there and can watch it grow.

Our "May Day Tree"
I used to work for a doctor MANY years ago and on May Day he would always bounce into the office singing, "HEY, HEY......1ST OF MAY.....OUTDOOR F#CKING BEGINS TODAY"....LOL

Monday, April 11, 2011

A Little Bit of Sunshine

We're feeling it.....both of us.......hope. I sat in the sun for a little bit with T. We needed the fresh air and going for a walk is one of the few things we can do that don't leave T in pain.

She's finally starting to heal. Her range of motion is starting to come back, but she has to be careful. She can't drive yet.....tried it and it hurt too much.

Radiation starts soon.....probably within the week. I know that will exhaust her and it's affect will be cumulative.....meaning it will get worse each week. She's going to have radiation 5 days a week for 6 weeks......but......we've gotten through sooooo much, I know we'll get through this too.

We'll be paying the doctors forever.....we had a benefit last year and we payed some of our doctors bills, but this is a new year and we've instantly added another $20,000 to our debt. Nothing I can do about that except, be frugal, and make monthly payments to everyone.

....but there is Sunshine......I watched T getting more sick and in pain and getting worse and now I get to watch her heal and become more herself each day.....and I've learned to love more, not care about the small stuff, forgive more, see the world from a very different point of view, I've grown and am a better person then I was......and most important, just keep moving forward.

Here comes the sun

I THOUGHT I'd learned to worry less, but really I've just learned to deal with my worry better and not get so upset, I loose my hope......kind of a "can do" attitude but different.

That is all...for now.

Monday, April 4, 2011

No Clue What to Name This Post

So many things swimming around in my brain.....I burst out into tears at odd moments when alone and loose myself in the tears......other times I look at my T and I just know she can beat this...and I see us growing old together.....I can actually see us sitting on a beach soaking up some sun over a picnic for many years to come.

I cornered one of her doctors and asked for hope, and she gave it to me. She said Metastatic disease can me managed and she has patients with it that are 5 years out and a some 10 years out. There are microscopic cells with the potential to become cancer floating around her body, we don't know how many, or if they will.....but we will watch and do scans every 3 to 4 months so that if there is a re-occurance we will catch it fast and treat it right away.

If you make it to 5 years, your odds of survival increase a little, if you make it to 10, they increase a lot more......and every 3 or 4 months when she has a scan, I will have a week of being scared out of my mind waiting for the results.

....but in my heart I believe we will grow old together.....I have to.....and that's how we have to live our lives.

Us in 2008

Wednesday, March 23, 2011

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.

Monday, March 21, 2011

Commercials that are plain WRONG

There is one (there are several variations) where they show a poor person suffering from some lung disease moaning and literally gasping for breath obviously close to death, in agony and blaming cigarettes.


These adds are a slap in the face to everyone who has ever watched a real live loved one go through exactly that horrible gasping which was soooo unbearable to watch. Not to mention, not everyone who dies like that does so because of cigaretts......ever heard of asthma?, COPD?, emphasema?


So congratulations for letting those of us with such a disease having nothing to do with cigarettes SEE the horrible death we fear our whole lives....one which is all but inevitable on a daily basis.


As for the "smokers" you want to reach, you aren't reaching them! YOU ARE NOT REACHING THEM! They are young or healthy now and could not possibly care less.....they laugh at those sick commercials.


My wife has metastatic breast cancer (metastatic meaning it has spread to other organs including the lungs in her case), she had to watch her mom die exactly as in your snuff film of a commercial, and now thanks to you, we must re-live it several times a day, every day through your sick commercial.......and we both must fear our own mortality from my asthma and she from her breast cancer and envision it not just in our heads, but live on TV and often.


Gee Thanks NYC Health! You are far more sick then the poor suffering people you portray and villify. Your commercials hurt more people daily then they will help ever.....quite honestly I doubt they will help anyone.


Oh and if I have to hear the American Cancer society sing Happy Birthday to itself one more time I swear I'll throw a brick at the TV.


Nuff Said!

Sunday, March 6, 2011

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.

Friday, March 4, 2011

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)

Saturday, February 26, 2011

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

Tuesday, February 22, 2011

My Stress Level

Even when I don't think I feel stressed out at any given moment, my asthma says otherwise.

I worry a lot, about everything. Been that way all my life......usually I have a good control of it, but these last few weeks, my asthma has been a nightmare....and a bit scary. Old Xanax that a doc gave me back in 2005 that I never took at the time is the only thing working. My asthma must be stress induced because the inhalers don't work well enough, but in combination with the xanax once, sometimes twice, a day keep me breathing. I need to get insurance soon, because I'm running out.

I always have a plan for something I'm not comfortable with, and a plan B and sometimes a plan C.....however, sometimes in life there are situations where you have to not care who you offend and just do what you know is right in your heart, consequences be damned.

An example of this is going full on after T's insurance company. I know getting state insurance officials involved pissed them off, but it was the only way to hold them accountable and make them do the right thing......after all, my wife's health and care is most important. The feelings or the job security of those trying to break the rules and deny her, her legal medical rights and treatment, are not my concern. My feeling is if you did your job right, I would not have had to call you out on it. It's not my nature to EVER mess with someones  living, but if your going to cost my wife the medical care she needs to live through this cancer, you bet I will do everything within the law to get her (my wife) the care she needs.

One of my best friends called me a pitbull when it comes to defending the ones I love.....all I have to say to that is D@mn right.

What they don't see or know is that when I am fighting for their rights, I am terrified I will fail or make things worse.....but I keep the faith that having right on my side, will get me through.....but in life, being right doesn't always mean you win.

My big stress not is T's pending surgery. I feel in my heart she will get through the surgery just fine, but I worry about the psychological affects of a mastectomy on her, so I'm grateful that reconstruction will either be completed or at least started at the same time during the same surgery. I believe that will make things easier to take during her recovery.

I'm not very religious, buy in my own way, I pray her pain during recovery will be minimal. I understand it will be the worst during the 1st 2 weeks until the drains come out, and most of what I've read tells me that after that the pain in considerably less.

I have a good friend coming to sit with me during her surgery next week....don't know if I will be good company in my state of worry, but I'm glad she will be there.