Cancer Sucks Blog

Friday the 13th, December 2019 - NEW CHEMO

noreply@blogger.com (Katerina Papadopoulos) — Fri, 13 Dec 2019 16:29:00 +0000

New Chemo Cocktail Time
(CMF - Cyclophosphamide, Methotrexate, and 5 Fluorouracil (also known as 5FU))

Took the wife to start her new chemo on Tuesday. Dr wants to add a 4th drug to the cocktail, but he needs to fight the insurance company so that drug will be added down the line.

It did not go well.....she threw up for 24+ hours after the chemo....could not eat, could not take any of her meds as she would throw up almost instantly after ingesting anything even the smallest amount of water. Finally she agreed to let me take her in for fluids and iv anti-nausea 2 days after chemo.....ended up leaving the house over an hour early as she started going south fast. Got her there and 5 nurses surrounded us and took care of my girl (LOVE OUR ONCOLOGY NURSES)!!!

She's still miserable and nausea is still bad, but she has been able to take her meds and eat VERY small meals VERY slowly (as in 1 to 2 spoons worth of food at a time only). Sipping water when she can.

I'm stressed beyond belief & exhausted...so much to do this weekend, but I will get it done and hope she gets some good rest while I'm out shopping, doing laundry, taking dog to the vet, etc...

I'm kind of coming apart at the seams....but I keep on going....what else can I do.

Thankful Thanksgiving 2018

noreply@blogger.com (Katerina Papadopoulos) — Fri, 13 Dec 2019 15:43:00 +0000

This week is Thanksgiving, and I have not updated in Quite some time.....it's been so crazy, I'm doing this in bullet points....please forgive me....this year has been CRAY CRAY!

October 2018
We discovered tumors wrapped around T's spine in 3 places. Cervical spine (top of spin) all the way down to mid thoracic (just below middle of back). Untreated it would result in paralysis, so no choice but surgery.

Crazy part...we thought she had a pinched nerve, complained to oncologist for awhile until he finally recommended we see an Ortho. PA....as luch would have it she was out and the best freaking Neurosurgeon in the hospital (my opinion), with 10 years as an Attending under her belt, had that morning started to do "clinic" in that office once a week.

THE SURGEON.....We loved her instantly.....the 1st words out of her mouth when we got down to business were, lets do some tests, because I don't like to change anatomy unless we have too, but if we do have to, I'm who you want. She was Confident but no arrogant, compassionate and kind....4 hour surgery had to be booked fast. Other's gave up their also important but not so urgent surgeries for us. It was booked at the Hospital I started my career at and so I was glad as I felt quite comfortable there. I still work for same Hospital System (we got bought out) and I knew most everyone in that hospital. This surgeon has since become a friend who I have insisted stay on T's care team. She is brilliant and caught what everyone else missed right away and saved my girl.

THE SURGERY.....so many fears.....would she live?.....would she be paralyzed?......how would I be able to care for her and keep my job? how would I get her up to out 3rd floor, 3 room walk up? The surgery was 4 hours with a nurse texting me progress updates from the OR.....I walked the entire hospital more times than I can count, never stopping to eat or drink or anything......mind racing the whole time.

FINALLY....I get the text that the surgery is over and to come to the desk as the doctor will be out shortly. They took me to this glass room with curtains a table and chairs and told me to wait there for the surgeon who would be out to speak to me herself. I was terrified....back in the day, they only put you in the fish bowl (glass room) if the news was bad......as it turns out, they now do this for everyone, for privacy. I sat head in hands waiting....I heard the door slide open and the doctor stepped inside.....before she could speak, I jumped up and asked....
ME: Is she alive?
DR: Yes!
ME: Is she paralyzed?
DR: No

She was so kind and compassionate and explained everything, and that we would keep her in the hospital for about a week (a few days longer than usual) knowing we live on a 3rd floor walk up and wanting to make sure she was ready for that

THE WEEK: I moved into her hospital room with her, going home for a few hours a day to care for the dog, shower, change and come back to sleep in the chair next to her. She made slow progress, but it was comforting having a whole spine team looking after her and out doc no matter how late, came to see us herself because she promised she would....we told her to stop that and we were ok with waiting until morning on long days.....the woman has integrity.....besides, if we needed her, I had her cell phone and the staff would check with her for orders.

DISCHARGE DAY: Scariest day of my life!

Caregiver Self Care

noreply@blogger.com (Katerina Papadopoulos) — Thu, 28 Feb 2019 19:11:00 +0000

"You cannot be a good caregiver for T, if you do not take care of you"

I've heard this from everyone. People take one look at me and ask, "are you doing anything to take care of you?", or "Are you taking time for you each day?" The answer is for the past 8 years has been, NOPE.

That needs to change and I am making it somewhat of a priority. I know, I know….that “somewhat” shouldn’t be there, but it is, so there you have it.

OK, I've had some medical issues. A racing heart (I believe from stress). The medical stuff is easy. I went to the ER when it got scary, I had EKGs, an Echo, a stress test, and just finished wearing a heart Event monitor for 30 DAYS! Yes, it sucked wearing that thing and sleeping with it on for that long. Now I will follow up to go over all the results and be evaluated by the cardiologist. She's leaning to its stress, I think/hope…..so that I basically just need to chill the f#ck out.

My problem is I seem to be....well....I'm not handling things as well anymore. Heck, after T's surgery when they sent her home with just me to care for her, I was terrified! I was trembling as I talked to the doctor about all the things I had to do to care for her wounds etc…I’ve not been myself since.

I used to be the person that no matter what I was going through, I had a smile on my face, a wiseass remark at the ready and I never ever showed weakness publically. You could have stabbed me and I would not give you the satisfaction of a tear. I have lost my ability to control my emotions.

I get so overwhelmed at times my eyes tear up, and it’s all I can do to keep my shit together when I’m at work. Thankfully I work in a cubical staring at a monitor all day, invisible to the others doing the same around me.

So, I’m making a real effort to…

· make friends.

· make time for me.

· learn to deal with my stress.

Trying to make a new friend as an adult is not easy. Fate had me stuck in an emergency room with a coworker for 10 hours. In that time I learned she was a really cool, funny, and kind person. The kind of person I like to be friends with. So, I am making an effort to become friends outside of work. Both of us have busy lives, so this is proving to be harder than expected. We haven’t even managed to have a cup of coffee together…LOL…but what the hell, I’m trying.

Making time for just me, is even harder. I feel guilt leaving T to go do something by myself, when she is too sick to leave the house. I shouldn’t. She sleeps most of those days away, and what’s the point of me sitting alone while she sleeps? I do sometimes take a drive after running errands for us, like laundry and food shopping, before I head home. Just listening to music and driving around a little. Better than nothing. It’s also hard because I don’t have a lot of friends I can just call and invite to do something on the fly.

As for my stress, I took Dr A and the patient navigators at the hospital up on their offer to give me 6 free therapy sessions and more if I want them. She is encouraging me to make friends, take me time, and deal with being a caregiver and all that entails…the worry, being scared, imagining what my life will be like when I lose her, not knowing when that will be. I’m mourning a woman who is still alive, and I hate that….she’s helping with that too.

That is all for now.

Feb. 25, 2019 - Update

noreply@blogger.com (Katerina Papadopoulos) — Mon, 25 Feb 2019 17:21:00 +0000

It's been awhile people....

1 YEAR AGO?: After many chemo therapies.....none of which worked....we finally found a chemo that is working in some places. It involves Progeta, Gemzar, and Herceptin (which she is allergic to, but helps the other drugs do their job).

It is working only on the tumors in her lungs.

OCTOBER 2018: We've had a rough 6 months.

T had been complaining for months that she felt like she might have a pinched nerve causing her pain in her right shoulder blade. Oncologist didn't even think to order an MRI, but did EVENTUALLY refer us to an Ortho. PA. As luck would have it, the PA had to cancel and we were seen by an amazing neurosurgeon, who saved T from pending paralysis from the neck down.

Amazing neurosurgeon, who I will refer to as Dr B going forward, ordered an MRI and we discovered that not only had the cancer spread to her bones, there were 2 places on her spine where there were tumors wrapped around her spine. One in cervical and one in mid thoracic spine.

What we learned was that when Cancer gets into the bones, or wrapped around them. It actually turns the bones to a gel like substance that is then absorbed by your body and those bones are gone....scary stuff!!!

Our choice was surgery or pending paralysis.....so we stopped the chemo that was working on the lungs mets to prepare. Then we discovered that the lower tumor on her spine had caused so much inflammation and swelling that is actually broke the bone, hence her tremendous pain. They put her on steroids to get the swelling down before surgery, and we got lucky. The swelling went down enough where the bone actually started healing itself.

OFF TO SURGERY WE WENT.....4 hours, during which I lost my mind with worry. They escorted me into a glass room with the curtains drawn and told me the surgeon was on her way out to talk to me. It felt like an eternity, but was actually probably 10 minutes. because I work for the health system that owns and runs most of the major hospitals in CT, I started to freak out. It used to be that they only put you in the glass room to talk, when the news was bad. I was scared she might be paralyzed, or dead.

The doctor walked in...

ME: Is she paralyzed?
DR: No
ME: Is she alive?
DR: Yes and everything went as well as can be expected. we got the tumors out, but we can't be sure we got all the cells, so we will have to plan radiation after she recovers for awhile.
ME: I thought you were going to tell me...at the other hospital, they only put family in the glass room to give them bad news.
DR: we now put EVERYONE in the glass rooms to talk to them in private now.
ME: WHEW
I hugged the stuffing out of the surgeon
(I don't remember the rest of that conversation.)

I moved into her hospital room with her were we stayed for the next 4 or 5 days...not sure how long it was....it's all an exhausted blur. i ran back home for a couple of hours a day to care for the dog.

When they were to discharge her, she was weak and unable to care for herself, and I was terrified to be taking her home all by myself. I had made arrangements to work from home for awhile so I could care for her.

FEB. 25, 2019 :

Healed from surgery well, but still weak and still some pain.
Did radiation to upper spine spot.
Neurosurgeon discovered that one of T's pupils was larger and less responsive to light than the other. Not explainable by meds or anything else. So everything on hold again.
Brain MRI to see if there is a tumor or something putting pressure on her eye.
MRI says no tumor or intracranial pressure (whew) Lost my mind waiting a week for those results.

NEXT STEPS

Cleared for steriotactic radiation on lower spine. Much stronger than regular radiation, but only 3 sessions needed. Need to book that.
T may have hardware issue as upper back shows some tenting, so new CT Cervical and Thoracic ordered for surgeon. Hoping we do not need to open her up again.
Oncologist wants full PET Scan to check on cancer everywhere except the bones.

OTHER
Chemo continues....we are on round 4 and she is still not strong enough to add the Herceptin and all the steroids that go along with taking a drug your highly allergic to.
I am back to working in the office
She is not strong enough to drive yet so working off-site on days she has appointments and chemo, so I can be with her.
Chemo is making her so sick, she is not eating much and has lost over 30 lbs.

ME
Stress affecting me Physically after 8 years. Pissing me off and scaring me a little. I've been a tough cookie and handling everything like a champ until now.

My heart started racing a LOT, making me dizzy and causing me chest pain and fear of a heart attack.
Went from work to Emergency Room one day (a 10 hour ordeal. Thankfully an amazing coworker took me and stayed with me). Since then had an echo, a stress test and wore a heart monitor for 30 days. Seeing cardiologist in a week, but like me, she suspects this is just stress. I have been sinus tacky for 90% of my days...which is just a fancy way of saying my heart is beating too fast. I'm also skipping beats and double beating at times. Makes me wicked dizzy at times. Going through the motions to make sure I'm ok.

I went to a caregiver support group with Dr. A facilitating. After she heard my update, Dr A went to the hospital patient navigators without even telling me and called me later that night. She does individual therapy for caregivers and grief counseling at $175/hr. which I could never afford. The navigators have an Angel Fund for caregivers and are paying for me to have 6 free sessions with her. How cool and sweet was that? I'm doing phone sessions once a week and they said they can give me more sessions if I want.

Trying to take care of me so I can keep taking care of my girl better. I haven't taken care of me in 8 years. Also trying to make new friends, which is hard as an adult. I'm picky about friends. they have to be compassionate and have a sense of humor.....harder to find then one would think. I'm a computer geek, so I am awkward and weird, which makes this extra hard for me. More on this in next post.

Pissed Off at the World!

noreply@blogger.com (Katerina Papadopoulos) — Sat, 28 Nov 2015 03:11:00 +0000

OK....so....

Turns out my girl's chemo stopped working....tumors grew and a new one popped up. Dr said, "without treatment 6 months would be optimistic"....so she begins a new oral chemo. on Monday. It's called Xeloda and it has crazy possible side effects, so I got permission to work from home for 2 weeks-ish...depending on how she does. Was scared to leave her alone. The new thing to do for cancer is immunotherapy, but there is only one study going on around here right now and it's closed and per the doctor, wasn't a good study. He believes that in 6 months or so, there will be lots of these studies and he is watching them so he can get her into one as soon as they are available....but we have to do something in the mean time.

I'm doing everything I can, but I'm basically helpless....and really pissed about it. I'm staying positive and hopeful, but the littlest things piss me off, a LOT! Some days I get tearful, others I'm ok enough to keep going, and other days I just want to tell everyone off.

Cancer Sucks!!!

Dashboards Confessionals by a Stage IV Breast Cancer Patient

noreply@blogger.com (Katerina Papadopoulos) — Sun, 18 Oct 2015 22:50:00 +0000

So it's been more then a minute since my last update. T is responding well to the chemo....or was in the beginning. The tumors in her lungs were shrinking at such a fast rate that instead of ordering the regular protocol of 4 more chemo sessions, he did 2 more and then scans, but these scans showed the tumors didn't grow or shrink....the doctor seems to think it may be because we only did half the protocol, so 2 more. Last one is this coming Friday, then scans.

Anyone else on this chemo, Kadsayla? If so did you have these side effects also?

...hiccups?

...tender stomach? (We call it the punch, cause it feels like someone punched you in the stomach)?

...an empty feeling inside, like something is drilling out your insides?

...nausea that comes and goes throughout the 3 weeks between chemo sessions?

Anywho.....getting to the DASHBOARD CONFESSIONALS

When T was 1st diagnosed, she started placing her phone on the dashboard of her car and just talking about what was happening....it's unscripted and very raw, so not for the faint of heart. She has started posting them on a new blog in chronological order...Please go check them out and by all means comment and let us know you stopped by. The blog can be found at...
www.FMyBigC.blogspot.com

Peace & Love to you all.

Back in Chemo...

noreply@blogger.com (Katerina Papadopoulos) — Fri, 29 May 2015 02:49:00 +0000

It's been awhile....

Tina's cancer is back for the 4th time. Started a new chemo (Kadcyla) with tons of premeds (steroids) as she is allergic to all the chemo therapies that work on her cancer.... sigh.

It's making her quite sick and we have 9 more weeks to go before new scans. Then based on results we either stop or continue. The tumors are in her lungs this time.

We swallowed our pride and started a GoFundMe page to raise money for her medical bills. If you know me, you know I HATE to ask for help. I prefer to be the helper, and I feel like a beggar right now, but here goes.

If you can afford to donate anything please go to the link below and donate.
http://www.gofundme.com/vjb5rk

If you can't afford to donate would you go to the link below and click to share the link on FB or Twitter and ask your friends to support Tina.
http://www.gofundme.com/vjb5rk

If you can ask your church or school or local news agency to put up a poster you can click on the link, scroll down and click poster, and it will allow you to print out poster and place it on your local public bulletin boards.

Peace & Love to you all!

On Edge

noreply@blogger.com (Katerina Papadopoulos) — Sun, 03 Jun 2012 21:07:00 +0000

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.

April 2012 - Going and Getting Stronger!

noreply@blogger.com (Katerina Papadopoulos) — Tue, 17 Apr 2012 15:03:00 +0000

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!

Update December 2011

noreply@blogger.com (Katerina Papadopoulos) — Wed, 07 Dec 2011 01:45:00 +0000

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).

The Good and the Scary...and the "Who me?!?"

noreply@blogger.com (Katerina Papadopoulos) — Mon, 31 Oct 2011 21:36:00 +0000

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?

I wonder if we will say goodbye tomorrow...

noreply@blogger.com (Katerina Papadopoulos) — Fri, 30 Sep 2011 01:14:00 +0000

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!

Our Oncologist is leaving...sigh

noreply@blogger.com (Katerina Papadopoulos) — Tue, 20 Sep 2011 16:45:00 +0000

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.

Brave Bitch Breast Cancer Awareness Women's T-Shirt

noreply@blogger.com (Katerina Papadopoulos) — Fri, 12 Aug 2011 05:47:00 +0000

Click the image above to buy this shirt

Check out all our Breast Cancer Awareness gear

HERE

Long Over Due Post

noreply@blogger.com (Katerina Papadopoulos) — Tue, 19 Jul 2011 00:26:00 +0000

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.

Good People...

noreply@blogger.com (Katerina Papadopoulos) — Thu, 26 May 2011 18:05:00 +0000

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.

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

noreply@blogger.com (Katerina Papadopoulos) — Wed, 18 May 2011 04:22:00 +0000

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....

Radiation

noreply@blogger.com (Katerina Papadopoulos) — Mon, 09 May 2011 01:23:00 +0000

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?")

We Planted a Pine Tree in the Woods

noreply@blogger.com (Katerina Papadopoulos) — Sun, 01 May 2011 21:21:00 +0000

.........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

A Little Bit of Sunshine

noreply@blogger.com (Katerina Papadopoulos) — Mon, 11 Apr 2011 21:55:00 +0000

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.

No Clue What to Name This Post

noreply@blogger.com (Katerina Papadopoulos) — Tue, 05 Apr 2011 03:00:00 +0000

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

Here's something they don't tell you....

noreply@blogger.com (Katerina Papadopoulos) — Thu, 24 Mar 2011 00:12:00 +0000

....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.

Commercials that are plain WRONG

noreply@blogger.com (Katerina Papadopoulos) — Mon, 21 Mar 2011 18:19:00 +0000

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!

Healing

noreply@blogger.com (Katerina Papadopoulos) — Mon, 07 Mar 2011 05:16:00 +0000

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.

Quick Update

noreply@blogger.com (Katerina Papadopoulos) — Fri, 04 Mar 2011 12:33:00 +0000

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)