Friday, December 31, 2010

Sunday, December 12, 2010

Elizabeth Edwards

Tammy said it best...
I've been following her story since it was announced that she had cancer. As soon as it was publicly known, I assumed her husband would step back from the limelight, the presidential race, and tend to his wife, his support system, his core strength. 

When he did not, I began to count her days. And when he did not, I began to question his character. Before the rumors of any infidelity came out. I couldn't believe he was going to let her go through it alone. Who the hell does that to their spouse? 

Rest in Peace, Elizabeth

Wednesday, December 1, 2010

Wordless Wednesday

Tina with her mom June (who we recently lost to cancer and other complications).
Picture taken 2007

Sunday, November 21, 2010

Friday, November 19, 2010

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.

Sunday, November 14, 2010

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.

Friday, November 5, 2010

Chemotherapy is working....YAY!!!

In spite of the hell that goes along with it, the chemotherapy is working.

It's going to be for 12 more weeks of chemo. rather then 6, but after the 1st 2 treatments of the new chemo. (not counting today) we've already noticed quite a difference.

In case you don't remember the 1st round, which was more brutal, made the lesions in her liver no longer detectable as well as the lymph nodes in her chest. It shrunk the nodes in her lungs a little and also shrunk the lymph nodes under her arm a bit.

This new chemotherapy we discovered today, not only works especially well on the large, dense tumor in her breast, it will also continue to work of the other suspected tumors in her lungs, liver, and lymph nodes.

I know we still have a long road ahead, and some scary side effects to deal with, surgery to plan, and eventually 6 weeks of radiation/5 days a week, but at least we know it's working. IT'S WORKING!

I'm crying happy tears as I write this for the 1st time in a LONG time.....YAY!

A bit more then a moment of light...

Thursday

....really, REALLY enjoyed my evening out last night. I spent over an hour chit chatting with my friend Tina P. at the book store. Both our lives have been so crazy that it's been quite awhile since we got to just be and talk alone. I knew I had been missing the crap outta her, but didn't until last night realize JUST HOW MUCH I have missed our time together.

If that wasn't enough.......I then spend the next 2.5 hours chatting away with my friend Amanda, who I like talking to so much, I hadn't even realized that we were talking for that long.....the time just flew by.

With both these women I feel like I could talk about just about anything and be my silly, goofy, geeky self without reservation. There are only a handful of people in my life I feel this comfortable with, and it's a wonderful feeling.

Friday

Today was a chemo day that went well and quickly, and now my T is out with one of her most dear friends for a little escape of her own, and while I was out last night her friend S came over with a killer yummy soup too.

I feel rejuvenated.

Thursday, November 4, 2010

A Much Needed Break

Long day ahead, but it's going to end with a much needed break.....yay!

Errands: I have to....

  • hit the supermarket to return like a million water bottles and cans cause I put it off for way to long...LOL... and pick up a few things while I'm there.
  • hit the wholesale place for a couple of things
  • get T's scripts from the pharmacy 'cause she has to start her pre-meds for chemo tomorrow, tonight
  • wash the kitchen floor and clean up around here a bit

A much needed break:

It's been a rough week...stress, when it gets to a certain level, causes some messed up problems for me. I haven't slept in like 4 days, my stomach has been so bad, I'm living on Zantac for the constant heartburn. I've been having panic attacks again....they are so bad, my heart hurts and I have to take medicine and chill. For those who don't know, I have a leaky valve, hence the pain with stress, and my asthma has really been bad too.....so I'm really looking forward to tonight.

Tonight I get a nice break. T's got her really sweet friend Sara coming over with home made dinner. I'm headed to the Barns and Noble to meet up with 1 friend Tina at 5:30 and another friend Amanda at 7:pm. Tina and I haven't had a chance to hang in awhile (both our lives have been crazy) so I'm really looking forward to seeing her. Then I'm meeting Amanda there who I just love to chat with about pretty much anything. We both love the book store and I just know I'm not getting outta there without something new to read....perhaps I'll find a Ken Follett that I haven't already read....and I always have to check out the geek mags....he he he

....and we're off.....

Tuesday, November 2, 2010

Lost, but trying to find my way

I feel so lost....

I'm sad, I'm angry, and mostly I'm scared.....I'm on an out of control roller coaster and all I can do is hold on and wait for the ride to end.....not all the time.....There are good happy moments mixed in.

I feel like all my emotions are amplified. Someone cut me off in traffic recently, and instead of mumbling, "what an idiot" and moving on......I completely lost my sh!t...not that they could hear me or anything.....when I cry, I can't control it anymore.

I feel like I've been a crappy friend to my little core group of "family"....all I can do is hope they understand how overwhelmed I am and that while I might not, check in often enough, I think about them all every day....and I plan to try a lot harder.....these are not the only friends that matter, but the friends that matter the most

  • 2 friends just broke up and are both hurting....trying to spend more time with both of them as much for them as for myself.....really appreciate the break visiting with them gives me and can only hope it helps them too.
  • 1 friend is going through her own personal hell, worried about her son.....I haven't been there for her nearly enough....she even hooked me up with entertainment for those long days when T is sick and we are trapped in the apt.....wicked cool....I am excited to see her in a few days....miss the crap outta her, but not sure how I can help.
  • 1 friend just had surgery and is also worried about said son.....I haven't been able to get my @ss over there to visit in person.....so I've been checking in only via text/Internet...sorry bud.
  • 1 friend (and her partner) are dealing with exactly what I am with her dad's cancer....gotta make plans to hang with them soon, I know more then anyone, they could use a relaxing break with friends.
  • 1 bright spot: 2 friends are in a sweet happy place....really super happy for them.....they have been really supportive and I just enjoy hanging and being silly with them every once in awhile.
  • 1 friend fighting breast cancer herself who I re-connected with vis F.B. and who I need to write more often.
  • ...etc...

I'm doing my best.....but.....I really want to do better in a lot of ways.....I mean more then I'm saying, but not able to put it into words.....it's 1:am and I'm not even sure I'm making any sense anymore, so good night for now.

Taking the Good with the Bad - Bullet Point Tuesday

The Medical stuff.....

  • Nausea on new chemotherapy better.
  • Neuropathy in hands and feet worse
  • Medication for the neuropathy side effect, not bad....not great either
  • Next chemo. Friday (6 more weeks)

On My Mind - Perspective Change

  • Worried about the neuropathy
  • Worried and stressed about everything....kind of on edge all the time
  • Tina's Benefit is coming up....nervous
  • Surgery will most likely be early December...sitting in that waiting room is not fun....dreading that.
  • Then Radiation 5 days a week for 6 weeks......worried about how well T will handle that...it's supposed to be brutal.....and how will I handle watching her suffer even more....breaks my heart now.
  • I'm seeing people and things in my life in a whole new light and realizing who and what is worth it, and who and what isn't. A few surprises I didn't expect...some good....some bad....better to know these things now and use the info. to make the most of life....and instead of wasting time on "good time" friends.....enjoying the company and being there for those that are there for me all the time. 
  • My little core of friends rules, most especially my friend K8T, I love you like a sister...thanks so very much for letting me vent while we crack a few beers open, and making me laugh when I need to the most. 
I'm tired, so good night everyone.

PS
I may not be the best cook, but I made a killer Pasta Primavera tonight.....so proud of myself.

Monday, October 25, 2010

Neurontin

Brief update: Neuropathy has set in, in both Tina's hands and feet from the new chemo. medications, specifically from the Taxol which is supposed to work great on the dense breast cancer tumor.

Now we have to TRY "Neurontin" to help this side effect, but Neurontin has a whole host of OTHER side effects of it's own......really???

Ugh! My poor girl. Her feet hurt so much it's painful to walk and her hands hurt like that too.

Sunday, October 24, 2010

True Friendship

Euripedes said it best....

"Real friendship is shown in times of trouble; prosperity is full of friends."

Times of trouble, fear, and sickness let us see clearly who is, and who is not a true friend.

Thank you to my wonderful friends.....you know who you are.

Friday, October 22, 2010

"I wanna newwwww drug..."

"....one that won't make me sick."

Sitting in chemo room with T as I write this. She's been REALLY sick as of late coupled with morning her mom and now fully understanding all her mom endured during her treatment has been a bit too much to take.

Done with the 1st set of chemo meds and now starting Taxol and Herceptin for the next 8 weeks and treatments are EVERY week now.

Scared sh!tless about how she will react to the Taxol. Tina has a little neuropathy in her hands already without the Taxol and the Taxol is known to cause or worsen that side-effect....can't catch a break.

They SAY the nausea should not be as bad on this new drug, but the new drug has it's own set of scary side-effects...neuropathy in hands and feet being the worst on the list.

Oh and did I mention these meds make menopause worse......wicked hot flashes! Poor T goes from blazing hot to freezing cold and back again in minutes at times.

As for me, I'm loosing my mind at times.....hard to watch and not be able to do anything but be there....and by hard I mean sometimes I want to scream and hit things. She sometimes out of pain, sickness, grief, frustration and 100 other things will just curl up in a ball and weep uncontrollably. Rips my heart out.

I keep saying to her and myself that in 6 to 8 month or so, this will be over.....but it's little comfort.

That is all for now.....that's enough

Friday, October 15, 2010

Overwhelmed

Sometimes I get so overwhelmed I just can't deal with the simplest of tasks.

Holding my girl
The heater in our apartment doesn't work again and we need to tell our landlord ASAP. Normally something like this would not stress me out too much, but with T going through cancer treatment and her immunity being compromised as a result, has me worried that we will spend yet another winter with a heater that works occasionally at best. 

That jerk my landlord hired to buy and install this heater took advantage of her, she got swindled by her "repair man" who got this non returnable heater for her...we call him Mr. Magoo. He's actually a cross between Mr. Magoo and Archie Bunker and never EVER admits he's clueless.

I hope she doesn't use him again and just chooses to buy a good heater herself from sears or where ever? They deliver, they install, and they guarantee their stuff and if something is wrong they will either fix or replace it....Mr. Magoo who is quite frankly a jack ass better not try and take advantage of her again. She and we deserve better.

T has developed a new side effect. The palms of her hands feel as if she burned them on a hot frying pan. They are tender, red, and tingle. This raises new problems. The new chemotherapy she's supposed to start in a week causes the problem she's already having with her hands, which means it could make it worse.....so off to a neurologist we go to find out exactly what is causing this side effect just to make sure.

The neurologist will determine the cause, the oncologist will then have to re-think the type of chemo she can give T....oh and that might mean chemo every single week with extra medicine to try and control the side effects. This means we also have to worry about how accommodating T's work will be with her needing treatment EVERY week.

If that's not enough, we are seeing the surgeon next Thursday late in the afternoon to decide if it's time for surgery yet. If it is, we have to pray her work will accommodate us being as they are not allowing her to even apply for FMLA until November (because she qualified months ago but missed the 5 day window to sign up that they never told her about).....so will she have a job and keep her insurance or not? 

I don't want to put off her surgery until she can sign up for FMLA, if they don’t accommodate us, I'm gonna be pissed....sooooo worried about that.

All this is preventing me from enjoying the bit of happy news we got which is that the chemo is working. The tumors are smaller.....even the nodes in her lungs which we don't know if they are cancer or not have shrunk, SOME of the lymph nodes even disappeared......what the doctors are doing is working, and I don't want T's f#cking job to interfere with that, even though the doctors will work with us either way....

I want to be happy, cry out of frustration, and scream all at once to express a dozen conflicting emotions at once.

This all hit me at once and......I just shut down for a few hours to get my sh!t together before I could do anything.....sounds stupid......silly even.....but I just couldn't deal. My world is out of control and that's really hard for someone like me who tries to think of every possible scenario so I can have a plan for each and every one.

I just want to do some fun things with my girl as much as possible to help us both get through this. She's a tough cookie, my girl......stronger then she thinks she is and while I fear EVERYTHING, I long for the day we can look back on all this as a distant memory.

Monday, October 11, 2010

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?

Thursday, October 7, 2010

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.

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

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

Monday, September 27, 2010

Day by day I gazed upon her, Day by day I sighed with passion, Day by day my heart within me Grew more hot with love and longing

Sitting on the couch watching MSNBC......it's 5 after 11: pm......and I'm really enjoying the sound of the rain outside and the smell.......I love the smell of rain. Tina loves it too......I'm tempted to wake her and make her come sit with me......LOL.....doubt that would go over too well......"you woke me up so I could smell the rain?!?!, are you crazy?!?!".......the answer to that question we all know is....."YES, yes, I am crazy....duh!"


Then again she might find it amusing that I woke her to smell the rain.....hummmmm????

Living one day at a time......the days blend together with moments here and there that stand out. I do love being able to spend all this time with T.....I just wish she wasn't so sick.

Had a visit from our adorable nieces the other day, and T's bro and sis-in-law......I love spending time with them, especially little Remmy who is just adorable in every way. She is so little and yet full of personality.....there is nothing more beautiful then children her age....still discovering the world and already so smart.

T was so sick that day, but hid it well, so she could see and enjoy all their company. Every time little Remmy called her Auntie T, T's face lite up like a Christmas tree.....she was exhausted by the time they left, but it was the best thing for her......just brightened us both up actually. Kids have a way of doing that....and we get to be the cool aunties that live over an ice cream parlor......oh yeah! Lovin' that.

rut roh, she's up......not to smell the rain......nausea bad.....

10 minutes later.......OK, feeling better she's sitting next to me and I shit you not, she just sniffed the air and said she loved the smell of the rain and wishes she could go out and dance in it.......do I know my girl or what?

Saturday, September 25, 2010

Adriamycin and Cytoxan

Friday was round 3 of this little cocktail of chemotherapy drugs for T.......1 more to go in 2 weeks and then.....

....and then we change the drugs and see the surgeon to discuss what comes next.

  1. surgery, reconstruction, more chemo, then radiation
  2. surgery, more chemo, radiation, then reconstruction
  3. more chemo, surgery, reconstruction, more chemo, then radiation

I'm thinking option 3, but we shall see, depends on what the surgeon thinks.

T is having a hard time....cabin fever. We had company one night last week which was really nice. T's friend S came over and we had home made pizza. It was good too!....and it was nice to have company.

Can't wait 'til tomorrow.....her brother is coming over with the girls.....this is the 1st time they will see Auntie Tina with no hair. She gets a kick out of the way kids react to her being bald. She gives them a big smile when she catches them starring. It's cute how amazed they look and the big smiles T gets in return.

As for me, I teeter between OK and pissed off at the world and everyone in it......about every 2.5 seconds. Trying to keep that under control is not easy.

Sunday, September 12, 2010

Hair Today, Gone Tomorrow

Had 2 whole good days where Tina didn't feel too bad. Even had company over one night and made it to the Oyster Fest for about an hour.

Today sucked! and tomorrow doesn't look good either. T's hair has started falling out in clumps and her scalp hurts something awful.

What's worse is she's shutting me out.....this has all been the most horrible experience ever......I do as much as anyone who loves someone going through this can do and sometimes she says she appreciates it and sometime, like today, she just shuts me out completely. She's been in the other room almost since the second I got up this morning and now it's night and she will no doubt fall asleep for the night.

I feel helpless, rejected, and worthless.

I've been alone all day in the living room.....looked up some things to help her scalp pain, but she won't even try them......she just wants to be alone in bed.......I don't think I've cried this much in my entire life combined....I was so upset I even threw up a few times, and if you know me, i never EVER throw up, no matter how sick I get.

Feeling miserable, rejected, alone, unloved......my life sucks right now.

I love her with everything I am, but what does it matter..........

Friday, September 10, 2010

Chemotherapy #2 Today

Tina is at chemo right now with her cousins who came down all the way from NY just to go sit with her while they pump her up with chemo. meds and fluids. I feel weird not taking her myself, but she wanted to accept all the offers of different cousins to go with her to a chemo. treatment.....that way she can both spend time with them and visit and also let them know that she appreciates their support.

Cousins she sees maybe only once a year at a family function now and again, all stepped up when they heard she was sick. They organized a night out just to spend time together before her 1st chemo., they are organizing a fundraiser/benefit for her, and they have been writing her on-line, sending cards, and calling regularly, just so talk and offer support. It's a beautiful thing that gives me hope and it makes me so happy when her phone rings and she smiles at the caller ID and happily picks up the phone to chat with them.

I'm dreading this evening and wondering how sick this will make my girl tonight and in the days to come. I'm hoping her new medicine for the nausea will make it easier then last time and that the extra fluids will help as well.

Tuesday, September 7, 2010

Just in time for...

...her next chemotherapy.

Finally T feels a bit better and even made it to work yesterday for 6 hours. I don't dare let her drive herself though....when I picked her up yesterday, she almost instantly fell asleep in the car. Today looks like she's going to make it through a full day at work.

Her next chemotherapy is on Friday.....sigh!

I hope this treatment goes better then the last one. They found 2 drugs that actually help T's nausea and they will give those to her with her chemo. and also they will give her extra fluids before we leave too. Cross everything people!

She will most likely begin to loose her hair after this treatment. She knows it's coming, but I know her, and this will REALLY upset her. I just hope I'm with her or that it happens gradually.

I've been sleeping less and less.....even when i do drag myself to bed I just can't turn my head off....I lay awake worried about EVERYTHING.....exhausted and wired all at the same time....hard to explain.

Friends and family love us and call from time to time to check in, but this is one of those things that you think you know what it would be like.......until your in it, and you see what it's REALLY like, and realize that no one who hasn't actually been there has a clue....which sucks because you need them to understand. That's why everyone in that chemo. room is able to bond with the other patients so quickly and easily.

A friend from way back in high school, who has gone through all of this contacted me today. Just talking to her made me feel better. We don't talk often, but she is one of those rare people that you can not talk to for years and when you do, it's like no time has past. Thanks Facebook for making communication so easy with old friends....and thanks Toula!

I am grateful for my friends love and support and T's family who just jumped right in, to be there for us. Her cousin L is going to have a benefit/party for her and is going all out with everyone on that side of her family all jumping in to help....I wouldn't have a clue as to how to organize something like that, so I'm really thankful to him for having the idea and making it happen.....I'll write more about that as it gets closer and we pick a date......just thank you everyone!

You might not think that a hug hello or a text or call means or helps much, but it helps more then you could imagine.....it breeds hope....and reminds us, at our loneliest moments, that we are not alone.

Wednesday, September 1, 2010

Neulasta Shot - Mobile blogging

Wholly crap! This shot is supposed to increase her white blood cell count...but it also makes her bones ache, and makes her skin so sensitive to the touch...lots of pain.

On the plus side, I dragged a reluctant T back to the doctor today and they found the winning combo of anti-nausea meds FINALLY!

God I hope this makes the next round of chemo easier!

Another patient who did the same chemo meds said she was as bad as T her 1st round and that her 1st round was by FAR worse then the rest. That made me feel better about all this.

Until this afternoon T has been in so much pain that she spent the last 2 days mostly crying...broke my heart.

So glad she's feeling a bit better! Still to exhausted to do much, but at least she can eat now...yay!

Monday, August 30, 2010

Thoughtful, thoughts rattling around in my head

If a miracle happened and I won the lottery (never gonna happen, but IF)...I would travel from one oncologist to another and give money directly to patients with crappy insurance or no insurance. I would change the world 1 person at a time.....

Side Note: There was a little old lady having chemotherapy in the chair next to T's today. She was kind and sweet and alone.

It made me so sad to know that she was going through that alone....and still she spoke kindly to us, encouraged us to hang in there, and when she left, she offered Tina her blanket as it's very cold in the chemotherapy room. I make a point of introducing us and talking to whoever is near us, when we go into that room.

It's a room of strangers who bond in seconds over a common enemy....cancer! Everyone is sweet and kind to each other in there, because they know what is and is not important. The rest of the world outside is oblivious.

Can you say nausea, boys and girls?

Poor T had a horrible day of really bad nausea. She's been so sick, eating and drinking has been really hard for her.

When we got to the doctor, they took one look at her and hooked her up to an IV to give her fluids and anti-nausea meds, that didn't work. The fluids helped a tiny little bit.....I expect we will go back again tomorrow to do that again, and the doc definately wants to see and hydrate her again Friday.

I've never seen T this miserable and sick.....it makes me feel helpless and yet grateful that I can be here to take care of her all at the same time. I don't know what she would have done if I wasn't here....not that I actually did much...
...tried to get her to eat and drink
...drove her to the doctor
...ran a few errands

 I wish these 1st four chemotherapy treatments would fly by.....1 down, 3 to go.....after that, they drop the heavy meds making her so sick and switch to meds she will tolerate way better....or so they say.

If that's all not enough, we have to worry that her work will screw her over and she'll loose her job because she's sick, in spite of the fact that we have doctors notes. They are making this way harder on T then they have to......people are selfish and evil sometimes....got the name of a good employment lawyer from a friend, just in case....hope we don't need him though.

Sunday, August 29, 2010

A Long Day

Tried to get Tina out of the house for a couple of hours today....it exhausted her in every way.....physically, mentally, emotionally.....like much of this weekend, I'm sitting next to her while she sleeps quietly.

It has been 3 days of nausea that has tried her patience, her strength and her determination.....she is stronger then she thinks, although there is no way she can go to work tomorrow and be, not only on her feet all day, but lifting 50 lb. bags of food, and chopping and cooking all day.

I've watched her break down, I've watched her give up, I've watched her fight, I've watched her get angry, I've watched her laugh.....and now as I watch her sleep, I know that I love her more then I thought it was possible to love another human being.

Through all this...and we've only just begun this journey......I have been on an emotional roller coaster myself.....not quite the same as hers, but just as scary and with as many twists, dips and turns.....I have to deal with her crazy mood swings, but she has to deal with mine too...

frustration....I find myself snapping at people for no reason, yelling at drivers who cut me off like some kind of lunatic one minute, and laughing at myself for it later.....hoping my friends understand when I'm angry, or quiet or forgetful.....hope they and T know it's the frustration talking and that I don't mean half the sh!t I say sometimes....so take nothing personally, please.

Nothing frustrates me more then a problem I can't fix. She has to struggle through a treatment that will last for almost a full year and there is nothing I can do but watch, and try to help her through it as best I can.....it sucks when your an "I wanna fix it now" kind of person......and did I mention, patience is not a virtue I have a lot of.

.....tomorrow is another day.....

Saturday, August 28, 2010

Chemotherapy- Not for the weak


THE DAY OF TREATMENT:

Let's see......we got there, everyone was really sweet and it all went smoothly. I brought T's laptop for her to distract her....
they checked her blood counts, with a finger stick,
gave her, her EMENS pill (it cost $356.40 for 3 pills). She takes it for 3 days with each chemo. along with another drug that's a steroid also for 3 days.
IV of anti-nausea
then they hung all the chemo. drugs

She felt good through the treatment...made friends with an older couple who was there too

In spite of the meds., nausea kicked in, in a big way around 6:00 pm. My poor girl was praying she could throw up for a few hours, but the meds didn't make that easy.....by 8 she was throwing up  and continued for another 2 hours. Thankfully after that, exhaustion kicked in and she slept through the night.

DAY 2:

Nausea is back, but not as bad...meds in.....ginger tea made.....breakfast being eaten with a healthy dose of saltines. With hope she'll start to feel better and better as the day goes on......exhaustion should hit her hard they say today or tomorrow......we'll see....maybe the steroid will help with that.

Just want her to feel better

Friday, August 27, 2010

1st Chemotherapy Today!


Headed to T's 1st Chemotherapy in 15 minutes. 


Time to fight!

I might try mobile Blogging at some point during the process.

Everybody think happy thoughts and send some good vibes our way!

Wednesday, August 25, 2010

Tick Tock

Tina's 1st chemotherapy this Friday got changed from 9:am to 1:pm and we're gonna be there for like 3 or 4 hours. They said the 1st 2 sessions would be longer.....they weren't kidding.

Waiting is freaking us both out.....just want to see what it will be like, how she'll react, how she will recover, how will she feel come Monday when she has to go back to work.....we shall see.

They are giving her the stronger of the 2 choices of chemotherapy for her situation. It causes more nausea then the other kind of chemo. so they said they will be giving her an IV drug for the nausea in addition to the pills we got already.

I spent all day today cleaning to make the apt. germ free by Friday, but I have so much more to do. We made chicken soup late tonight....I'll finish it off tomorrow......

I have so much to do tomorrow.....laundry with comforters, sheets and everything, bank,and a couple of stores....then finish off the soup, put laundry away, and more cleaning of the bedroom and kitchen.

I have to be done tomorrow because Friday T's gonna be a basket case waiting for her 1st chemotherapy....no clue how I'll be.

OK, off to bed....I need some sleep...getting up with T at 4:45 am every morning is killing me. I usually try and get a little more sleep after she leaves at 5:30 am, but I have shit to do and get done before she comes home at 3:pm-ish.

Tuesday, August 24, 2010

What to eat and what not to eat, THAT is the question.

Anyone out there have any experience or knowledge about what is good to eat during chemotherapy and what is good to avoid?

Tina and I have both been doing a lot of reading on the internet. I've found there is a LOT of misinformation out there, so for now I'm sticking with WebMD .

Can anyone recommend any other reputable websites that we can go to to learn more?

We plan to consult with a nutritionist soon, but would still like to read more for ourselves as chemo. starts THIS Friday.

Sunday, August 22, 2010

Stress

Stress and worry of the unknown really f#cks with who you are at times. This is what a bad day is like...

When T is scared,and she's scared sh!tless about her 1st chemo this Friday and having all those chemicals running through her body.....she becomes very irritable and critical.

When I'm scared, and I am, I try to hide it from her mostly....and just yell at every idiot driver on my way to the store.....i take it out on strangers who can't hear me.....I try to ignore the nit picking she does out of fear and stress, but sometimes it gets so bad that I have to speak up and tell her to stop because she makes me feel that I can't do ANYTHING right.

She gets it immediately, and stops for awhile......but also then feels bad because she knows she does that......then I feel bad for making her feel bad......sigh!

I love her so much I hate that she's going through this.....I hate that I'm going through this......I hate that I spoke up for myself the other night and made her so sad on top of the fear she's already feeling.

I hope that once she has the chemo and sees exactly how she will react and feel, that it will be less scary and we can fall into a routine with it.....and maybe relax enough to enjoy the time between treatments more.

Thursday, August 19, 2010

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.

Wednesday, August 18, 2010

On a Mission

Been trying to raise money for our crazy out of pocket  medical bills......not that anything has worked so far.

So LATE the other night I created a "Donations Web Site" . Twittered it out and Facebooked it out too and even put it on a traffic exchange and spent hours surfing for credits.....so far 2 people donated.

Not feeling too hopeful about this one, but it's worth a shot. I asked everyone on twitter and facebook to share or re-tweet it, which I hate doing. Asking people to post or tweet something for me, that is......but pride went out the window a long time ago. A lot shared it at least. Thanks for those that did. Means a lot to me.

I'm going to try posting the link different days and times of day also.

If anyone is actually reading this blog and you have a blog yourself, would you consider writing a post about this or placing a link on your page? ...and email me and tell me, if you do with your blog address so I can link back to you. I'm going to add Links to Friends and supporters in the sidebar this weekend if not sooner.

Headed to hospital to get Tina into surgery to put her port in her chest so they can start chemo next week.....

Feel free to follow me on Twitter at http://twitter.com/katpop

Tuesday, August 17, 2010

OMFG!!!!!

Went to the pharmacy to pick up some medicine for T's 1st chemotherapy and almost fainted when they told me the price.

...are you sitting down....

$356.40 for THREE PILLS!.....I sh!t you not......and then I found out she has to take this medication with EVERY chemo. treatment! (((THUD!)))

I found myself sobbing in the car, trying to get a grip so I could drive.

Called the doctor and asked them to call me tomorrow so I can ask for samples, if they even have them for this kinda drug.

Then a moment of WHEW! I looked up T's benefits and discovered there is an out of pocket max for non-covered and covered drugs.......WHEW!!!

All these emotions from what was to be a quick stop at the pharmacy on my way to the supermarket.....I feel like I ran a marathon.

I keep telling myself everything is going to be o.k., but I find myself on an emotional roller coaster 24/7

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

Sunday, August 15, 2010

What I DO believe

I believe in Family and Friends

  • The people who come or call because they love you.
  • Who spend time with you because you mean something to each other.
  • The people you have connected with so deeply that you could not talk for years, or see each other, or hear from each other.....and yet, when you do, you pick up where you left off, as if no time has past.
  • The people who drop everything in a crisis and are there for you and know that you would do they same for them and have, and appreciate it.
  • The boy you watched grow into a man, who you would die for, because you know their love is unconditional.....and you want him to know your love for him is also unconditional.
  • The young girl you watched grow up to be a beautiful, smart, confident woman, who stops to hug you and excitedly shares what's going on in her life, and knows how very proud and happy you are of her and for her.
  • The people you could fight with and tell to fuck off in one breath, knowing that if something bad happened you could still call them for help and they would come.
  • The woman who spent the last 13 years with me, who has been to hell and back with me and loves me worts and all.

I believe we are born full of love and compassion and joy........most loose these gifts as they live......VERY few keep them and those few......well.....their capacity to love only grows as they live....it's a beautiful thing......it's those people I care about and keep in my life and love and BELIEVE in with all my heart.

I believe in the people I love, partly because they believe in me......and hope they know how very much I love and believe in them.

Spending time with THESE people is ALL that matters....in good times and bad.

What I DON'T believe in

"They" said.....
trust in God
Everything happens for a reason
believe
pray
God never gives you more then you can handle

What kind of fucking advice is THAT?!?!?

I told my family I was gay and they disowned me when I was 21
I lost a baby in 2005
My wife had a meat scale fall on her head and have VERY painful surgery
I lost my job for something I didn't even do
I watched my mother-in-law slowly die
and now my wife (my world) has been diagnosed with cancer
I've struggled all my life

Trust in God you say? Why on earth would I trust in someone who is all powerful and yet never lifted a finger to help me? Would you trust in a human being who watched you suffer and had the ability to help and didn't?


Everything happens for a reason. Are you kidding me? That's just to stupid to bother commenting on.

Believe? Pray? i did more then that! There have been times when I curled up on the floor sobbing and BEGGED! He did NOTHING!

God never gives you more then you can handle. Really? That makes sense to someone? Does that make sense to anyone? By that logic, it would be O.K. to torcher anyone constantly because it wasn't more then they "could handle". That's not just crazy, it's sick!


How does one prevent becoming bitter when I see assholes, who are evil and selfish and care for no one but themselves get ahead......no thrive.....get all they want out of life.....with no consequences for the horrible things they did to get there.....not a one.

So this God I'm supposed to believe in and "trust in"...
...is able to help but doesn't
...only torcher me enough to not kill me physically
...but I should accept it because he has a "reason" for doing it

Either this god you all love is indifferent (the OPPOSITE OF LOVE), or a sadistic bastard. Either way why would I love and worship, or trust and believe in him?

If a human being did these things would you worship THEM?


All I've learned is that.....If you knock someone on their ass enough times, eventually they will stop trying to get up! 

.....and yet here I am....fighting for what I love AGAIN! Always fighting.....loosing a little of myself each time.

Apparently this God of yours hasn't finished teaching me the lesson yet.....hasn't taught me to stop getting up every time he mercilessly throws me to the ground.

FUCK HIM!!!!!!!!!!!!!!!!!!!! FUCK YOU YOU FUCKING FUCK!

Saturday, August 14, 2010

I Can Feel the Love

It's past midnight, Tina is sleeping next to me and I am beyond words.


Last week T's cousin cut her long beautiful hair into a cute short style and dyed it blond in preparation for her chemotherapy. She figures that until it falls out completely, she may as well look like a bad @ss for a few weeks. While we where there, her cousin suggested getting all the cousins together at a local bar before this all begins and we added some of our closest friends who are like family.


Side story, when T's mom went through chemotherapy she gave T her hair to donate, and T couldn't bare to part with it and had been growing hers to donate to  replace it, soooo....when we cut Tina's hair it was long enough to donate, which made her very happy.


Anywho, getting back to the night out.....there was such an overwhelming amount of love in that room. At one point we all joined hands and several cousins voiced their hopes and prayers, there were many many hugs and kisses and just a warmth I can't describe.


As if we weren't touched and overwhelmed already..........Tina came to me in tears at one point because we discovered that one friend's dad who is going through his own personal cancer hell and hardly knows us wants to help...Very overwhelmed!


REVISED: ....and that our friends who are on the board at our local G.L.B.T. Center want to have a fundraiser for T to help pay for her treatment. How amazing is that?!?!?! .....yeah well, that's not happening anymore for various reasons....sigh!


Thankfully a few friends HAVE rallied around us and visit and call and email and text their support and concern.....THAT means the world to us both. Tina's family might pick up the ball and do a family fundraiser soon.....her family, especially the Italian side have been wonderful to say the least. It's kind of beautiful.

Going Over Your Head Mother F-cker!

Going over the heads of the evil local management who was not only UN-helpful to my girl, but actively tried to screw her over....and threatened to fire her if she missed too many days of work for chemotherapy, etc...ACTUALLY WORKED! (Thanks T.P. for the advice)

I spoke to corporate and explained how she was being screwed out of FMLA, Short Term Disability, and Long Term Disability even though she qualified for both MONTHS ago, and that they were preventing a cancer patient from getting treatment that could save her life and threatening her job due to her illness.

I didn't threaten to file a lawsuit, I just literally begged for his help, but I'm sure THAT was a big motivation.

I even explained that a very small scheduling change could make it possible for my girl to work through her chemotherapy and reserve her Short term Disability for surgery and radiation in aprox. 6 months when she will need it.

The corporate guy, who was an angel (whatever his motivation) assured me she would be taken care of.

Well, I've never seen such a complete turn around in my entire life....suddenly she has job and insurance security and they will honor a 4 day work week for her during treatment (for which we provided a doctor's note), and if she needs extra days off, all she needs to do is let them know and she can have them and need not worry about loosing her job or ins. due to dipping below 30 hours.

I don't think this will make her HR person who SHOULD have called corporate herself and arraigned for all this as that is what HR is supposed to do will be too happy about this, but F#CK HER and the horse she rode in on!!!

We have soooo much to worry about, at least now we don't have to worry about her job or her insurance too anymore.

WHEW!!!!!!!!

Friday, August 13, 2010

Ever feel like you just got punched in the stomach?

Saw oncologist with the wife today.....they can't tell if the nodes in her lungs or the lesions in her liver are cancer or not because they are too small to diagnose or biopsy.....which means the doctor can't tell us if my girl is terminal or not.

They do say that even if they are cancer the chemo and radiation will "treat" them as well. My hope is that her treatment will obliterate them, but we have to watch them.

Wholly crap!

Part of me is happy they are treatable and part of me is devastated that the doctor can't say definitively that she is NOT terminal......scared....angry....and so many emotions in my head and heart i could not begin to explain how i feel, think, am.

Chemo starts 8/27/2010....2 weeks

She's Radioactive

Did you know that a Pet Scan makes you radioactive for several hours?

Well, it does.....they even give you a paper to prove it was because of a test and that your not in posetion of radioactive materials to build bombs with......the paper is to protect you from arrest by cops and so you can get through an airport....verrrrry interesting, no?

Tests and Oncologist Apt.

Another day off for Tina spent in doctors's offices starting at 7:15 am....should be done by 3:pm.

I feel like the poor girl never gets a real day off anymore.

Thursday, August 12, 2010

I Need a Miracle!

I'm so stressed and worried about so many things right now with regard to the wife's cancer, treatment, her job, her insurance, how she is handling everything.

I'm beside myself and feel quite paralyzed today.....although I am doing all I can I fear it won't be enough to make this as easy and stress free for her as something like this can be........LOL....i know, I'm nuts.

This is hard enough already without her work and other things making it worse. They say money can't buy happiness, but it can buy her health and well being and our sanity.......unfortunately, I lost the lottery again....LOL

If ever I've needed a miracle, it's now. Not sure how much more I can endure
Lost a baby
Dog died
Mother-in-law died
Wife has cancer
....and the entire world seems hell bent on making this as hard/impossible to handle and deal with as possible.

Asking for Help

With regard to my previous post, I contacted Corporate HR at my girl's company and they called me back right away, exchanged email addys, and he will try to help us out ASAP.

He also guaranteed me no retribution from local management for going over their heads. He will see to that personally. He will get some of his insurance experts etc together and figure out how best to help us in our time of need.

I feel good about this all, but will believe it when I see it. I asked for everything in writing when all is worked out which should not be a problem.

He said he does not want to deny a cancer patient/employee all the support and care they require, and he seemed very sincere. He even stayed on the phone with me a bit to assure me everything will be ok and that he will begin working on this right away and get back to me.

Heartless

My girl's employer is saying she doesn't have short term or long term disability and they are denying her the ability to sign up for short term or long term disability until November 2010........even though she qualified for it at 400 hours worked. She now has more then 800 hours worked and they are still making her wait until open enrollment in November 2010 because of a technicality we don't fully understand and they won't explain in terms we can understand.

Apparently you have a 1 week window to sign up for sort term disability at your 400 hours. She was never told this nor is it in the company handbook......we still don't understand why she can't sign up now being as she has more then met the requirements. Apparently they believe their employees are psychic.

So now she HAS to work through her chemotherapy no matter how sick it makes her, and if she has to call out sick too many times she has to worry about loosing her job and insurance completely......nice, huh?

As if Cancer, Chemotherapy, Surgery, and Radiation aren't enough to worry about!

Even with insurance this will be at least  $10,000 out of pocket not including medications etc...any millionairs out there wanna help?

Monday, August 9, 2010

Some Answers....More Questions....more tests

Overwhelmed to say the least.

The Cancer in her Right breast and right lymph nodes we knew about. There is also cancer in the lymph nodes near her collar bone on the right ride.

The scary unknowns right now are a few nodes in one of her lungs, which are suspicious for cancer and lesions on her liver which may or may not be anything......Ultrasound and Pet Scan to rule those out.

Oh and a possible cyst on her ovary which is a nothing.

Either way the treatment will be the same.....

  • Tests 1st
  • Consult with Oncologist
  • Port-o-cath surgically implanted over her good breast to administer the chemo and stuff next week.
  • Chemo for 4 to 6 months
  • Surgery to remove just the big lump, the lymph nodes under her arm, and reconstruction all at once.
  • Radiation 5 days a week for 6 weeks after that to make sure it's gone.

Her hair will probably fall out after the 2nd treatment so we may be going for the GI Jane hair cut sooner rather then later....eyebrows and eyelashes may or may not fall out as well.

Oddly I'm able to keep it together in her presence, as always i will fall apart tomorrow when she leaves for work....but I have so much to do.

My unemployment may or may not continue after I call them tomorrow, although I think it will continue until I find a job or it runs out in July of next summer....thankfully we have many friends and family who can pick up and take her to doctors if/when I am working.

So stressed out I can hardly deal with every day life, but I must. I wish I had the money to be able to stay home and take care of her for this whole next year, but unless lotto comes out (LOL) or Bill Gates becomes my new best friend.....such is life.

Today is the big day

We see the doctor at 4:45 pm to get all Tina's results and find out if the cancer has spread already or if we need more tests or if it's (we hope) JUST in her right breast and lymph node (where we already know it is).

We also, i think, will be coming up with a plan of attack with the doctor and setting up appointments with the oncologist, who is the same as the one (or rather, group) that her mom used.......THAT is a good thing....we have the best of the best when it comes to surgeons and oncologists.

We got to meet the staff in the oncologist's office already and loved them......fun, happy, upbeat and good at what they do.....it's also WHERE Tina will get her Chemo.....glad, no hospital....it's in the office with the nice staff we already met.

Tina is so scared she keeps having panic attacks, even more then usual......my poor girl.

I think once we know what we are dealing with AND have a plan.....i hope.....she will throw a switch inside and become the fighter she is by nature. Lone road ahead, but she can do it and i will do my best to support her and care for her.....I'm scared, protective and pissed all at the same time, sometimes.

FUCK CANCER!

Tuesday, August 3, 2010

Hurry Up and WAIT!

OK, turns out we will get some results from all the tests to see if the cancer has spread on Monday night......5:pm appointment....6 days.

I just want to hear that it hasn't spread which will mean it's managable.....sure chemo, surgery, and radiation, but a long life ahead.

If it has spread.......I don't even want to think about it.

Monday, August 2, 2010

Tests Tests Tests

Testing all day today to see if my girl's cancer has spread past her breast and lymph node...and by "all day" i mean ALL FREAKING DAY!

Starts with pre-meds at 1:30 am and ends with a bone scan starting at 4:45pm with a bunch of tests, medications and injections in between....ugh!.....there is literally something that has to be ingested, injected, or a place for us to be every hour.....sometimes every half hour....with one short 2 hour break during which she will be sleeping from all the meds and from which I will have to wake her to go to her last test.

....and the kicker....some of these tests take 2 weeks....that's 2 more weeks of not knowing if the cancer has spread.....2 weeks! 2 WEEKS!