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.

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