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.

T's Benefit is in 10 Days

To donate On-Line Click This Link http://tinamarie.bbnow.org

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.

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.....

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.

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.

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.

"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

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.

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?

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!

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?

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.

Who Loves You Baby?

I do...

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..........

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.

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.

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!