Saturday, July 30, 2011

I guess it is time I write this. I was thinking if I didn’t write it or talk about it that it would somehow not be true and go away – I am pretty sure that is not actually the case.
Yesterday was a really, really hard day.

Here are the facts – I am not sure how so much got lost in translation from the CT report in May to now – I think we were all on such a high from the great response, Eric and I didn’t ask enough questions. The spot that was a huge cluster on the front of my lungs was the spot that was left after the CT scan – I was under the impression that whole thing was gone – not so much. That is the spot that has grown since the May CT scan – we can’t just have it removed surgically because it is all twisted up in blood vessels and what not. There is a new spot but too small to show actual uptake. The spot on my left shoulder is still there – hasn’t gotten bigger or smaller and there is still some on my right rib.

I am so grateful that we knew about most of this on Monday otherwise yesterday would have been a complete mess – we had time to digest the news and get our questions together before actually talking to her.

So I started on a new chemo cocktail yesterday: carboplatin and gemcitabine. We are also trying to get me into a trail for Iniparib - I should know about this next week. These 2 chemos are more intense than what I was on with more potential for side effects. However, with this combo and the parp inhib (trial stuff) they have had great response.

I am going to start asking y’all for specific prayers – I have heard people having true miracles happen from this.

My prayer for this week is: to get into the trial and not feel side-effects.

Eric and I allowed ourselves to have our pity party last night and get it all out on the table, but today we woke up fresh and ready to take it on. We are well aware I more than likely will be in chemo for quite some time, but peace has been made with that fact. I was questioning how long I can go on like this, but after today doing what we do, I know I can do this forever – I might just need to sleep more than normal people.

I am also on the fence of doing a raw/vegan diet. We have pretty much been there on the vegan stuff except a few items and well with my vitamix, I can easily do raw. We also had the best gazpacho yesterday and I could easily eat that every day. I don’t know…I just don’t know. Of course I want to do all I can do but at what point am I going to drive myself crazy reading stuff that might or might not work for me?

Wednesday, July 27, 2011

Well….sh*t…the good, the bad and the in between

This is not at all what I had prepared myself for.
I got the call late Monday afternoon with my PET scan results.

I am still numb, confused, p*ssed off and asking why?

What I thought was extremely good news now turns out to be just okay news. I thought ALL the bone stuff was gone, but after getting the actual report yesterday and reading it – I still have stuff on my left shoulder. I so wanted all the bone stuff to be gone.

The bad news – the one spot on my lungs that was left has grown from 1.8 cmX1.3 cm at the time of the CT in May to 2.4 cm X 1.4 cm now, and I “think” this is actually a lymphnode, but I won’t know fore sure until Friday. And there is a new spot that is 4 mm…not big enough for the PET to tell what it is.

I am numb – I am not sure what to think, what to do, anything. This seems to be a bigger shock to me than the diagnoses, but I may have just forgotten that already.

From what Eric has read, this isn’t all that uncommon – it was uncommon how well I responded to the Axbraxian in the first place. He also read that many people have to try a few different chemos through their journey because the cancer adapts to the chemo – which is just so crazy to me.

I was just so sure I was done. I was so sure everything was working the way it should….I was so sure of it all. I just wanted a break from this so badly. I just didn’t want to have to think about “what ifs” anymore. I feel defeated.

But not for a second will I stop fighting…I have too much to fight for.

Thursday, July 21, 2011

A big, fat tantrum

Is what I want to throw – if I were an irrational 2 year-old.
I kind of know why kids throw massive tantrums when their world is out of control – that out of control feeling sucks and sometimes they just need to voice their opinion of suckage.

I was talking to Marci after a pretty rough day a few days ago and instead of calling her when I started feeling out of control I waited until I was full out of control – which is fine with her because at least we can laugh at some of the sh*t that comes out of my mouth and yes, I am one of those that once I say sometime out loud it frees me of the thought that circulate through my mind.

I figured out that this point in my life is so hard for me right now because all the coping mechanisms I have used for so long are no longer available in my bags of tricks.

Drinking alcohol. Yes I admit it – I used alcohol to numb me to the situation, to celebrate something, to free me for as long as I can remember. Things weren’t going to good – go out for a drink. Wanted something fun to do – go out for a drink. Just hang out with friends – drink. Broke up with a boyfriend – all the girls come drink. Rough day – a glass of wine at night…oh, who am I kidding – maybe a bottle!

Food. Food has always been an emotional crutch for me since as long as I can remember. Sad – eat. Happy – eat. Bored – eat. Mad – eat. Stressed – eat. And what I would reach for was always carb and sugar loaded food. Yes they made feel better in the moment, but always left me wondering why I did that.

Exercise. I have been knocked back to walking and yoga. I feel like I have been asked to go to the back of line because I can’t hang with the big girls. I will admit I haven’t given either of these the real benefit of the doubt because I am still being a baby and throwing a fit about my lack of physical conditioning. But exercise, a good hard sweat used to clear my mind and get me centered and now, well let’s just say the thought of me running more than 2 minutes makes me want to curl up and go to bed.

I am trying to find new coping mechanisms to help me deal with this, with everyday stress, with life as I now know it.

Sunday, July 17, 2011

Chemo Chronicle 2.12

12…12 chemos…way too many.
When I look at this, it really doesn’t surprise me how flippin’ beat down tired I am. Nothing I do seems to help this tiredness – I can’t sleep all day because, well that isn’t natural, but I can’t get up and actually do anything because I feel like I might just fall asleep at any given moment.

My appointment on Friday was nothing exciting. My white blood count is down, so I need to be careful this week and next with germs and what not, but other than that nothing new or exciting.

I am on edge about this coming Friday’s PET scan. The nurse prac. did tell me that I am “allowed” to call at 3:01 on Monday if I by chance haven’t heard from them. We were laughing because I told her I needed a time I was allowed to start calling and not seem like a crazy person pushing redial nonstop, so she said 3:01 is completely acceptable!

I keep telling myself this is my last Sunday to feel this tired and this beat down…here’s hoping!

Wednesday, July 13, 2011

Unknown

It hit me the other morning that I am scared of this coming Friday - scared of the unknown of what is to come next.


It is almost 99% certain that this will be my last full round of chemo and that scares me and it scares me if this is NOT my last full round. I had a complete pathological response last time I had chemo - that means the chemo ate away all the cancer last time too. It scares me that it came back, it scares me to think about chemo anymore, it scares me to think about it coming back again – it all scares me.

There are a few facts that Eric and Gina like to keep pointing out to me – really, one would think they get together and plan their defense speeches to me and all my arguments to them because their speeches are always the exact same – kind of annoying!

- I will be on maintenance this time and will have MANY more scans while on maintenance. I know this – I do, but the thought of going off full chemo does scare me.

- I have taken charge of my health this time around. Last time, I talked a good game but never really made huge changes. I figured, it was gone and that was that. The fact that I have cut sugar and processed foods out makes a huge difference.

- I don’t really have other statistics to look at here – there really aren’t many other women with trip negative metastatic who make it to maintenance, so yes this is a great achievement and a great stat to add for others in my situation.

I DO know all this stuff…but it doesn’t change the fact that I am scared of the unknown, of what is to come – I wish it did, but it just doesn’t.

Saturday, July 9, 2011

Chemo Chronicle 2.11

Eleven….eleven chemos done. This is all still so bizarre to me. I sometimes wonder if this will ever really seem normal or will it always be bizarre to me – especially when I start maintenance? I am guessing it will always seem bizarre to me – just what is happening in my body, what the medicine is doing in there, what my body is capable of and is doing…it is a true miracle.

I am defiantly feeling that this was number 11 – I haven’t been bouncing back near as fast as I was…who am I kidding – I am not bouncing back at all! I am pretty much either tired or exhausted all the time – even on Wednesdays and Thursdays which both used to be my “good” days. Eh, so be it. I still have to think that if tired is the worst of it, I can easily take it! I still have random bone pain but nothing is consistent from day to day. On one hand I wish it were so I could plan my days but on the other hand the bone pain not being consistent means sometimes I have it and sometimes I don’t – see all very bizarre!

Treatment this time was easy cheesy. I didn’t have to see Dr H or a nurse being as this was #2 of this round. At the end of my treatment though, I was talking to my infusion nurse about how zomata (bone medicine from last week) wipes me out.

The man next to me overheard and suggested I get unflavored pedialyte. I never knew they had unflavored but like me, he doesn’t eat sugar – hence the unflavored. It kind of taste like watered down pickle juice – it is a very odd after taste. Anyway, he told me he gets zomata once a month and until he figured out to do the pedialyte he was like me – exhausted. Then he tried the pedialyte and the hydration from it helps him feel good – even after treatment. We also chatted a bit about diet – I love talking to people who take the same approach as us to this – it does help me know we aren’t too crazy! He was given 12 months to live – 28 months ago! He cut all sugar, processed food, does mind/body/spirit approach as well! Really, this helped me SO much hearing this. It is hard to say no to wine, to eating out, to food at parties, but to know, really know that it made/will continue to make such a difference to my health – my no more cancer makes it totally worth it.

Wednesday, July 6, 2011

Peace or Drama?

Do you want to be right or be happy? Do you want peace or drama?
These were two questions that our minister talked about one Sunday that really, really hit home with me. You can’t have both at the same time – you can’t have peace and drama at the same time within yourself – you can’t want to be right and be happy at the same time – one of them takes ego and the other takes heart/Spirit/love.

I feel like a few weeks ago were filled with drama within myself – I wasn’t allowing the peace to be in me – I wasn’t allowing myself to get in that place that I know and love – in my heart. I was only allowing myself to have turmoil within my heart – and it was a bad feeling.

I was taking the simplest things to heart, thinking if someone said something it was automatically directed at me and my guard and defenses went up. Of course, I talked to Eric about it but his answers weren’t what I was looking for – I wanted him to justify the fact that I “should” have my defenses up and possibly start an argument with these people. Then my next stop as always was Marci, but when she told me the same thing I knew the drama was within me – not with these other people.

I had been down, feeling hopeless and like I was drowning. Once I made the decision that I was going to ask for help – get back on Lexapro, something in me changed – even before I started the medicine. I realized even though I need a little extra help with medicine that it was still up to me to change my attitude, my thoughts because the more I thought about feeling bad, the worse I felt.

It took a lot of going inside my heart, praying for guidance and understanding with this and a lot not to get upset, not to let the negative thoughts get me down and keep me down and let go. For this I am thankful – I can tell I have grown and am continuing to grown into the person I want to be – one who forgives easily (yes, even myself), one who turns to God for strength and guidance and one who is happy – truly happy.

Saturday, July 2, 2011

Chemo Chronicle 2.10

I really can’t believe I am starting my 4th cycle. On one hand it seems like these past 3 cycles have all gone so fast but on the other hand, I feel like we have been dealing with this forever – time is such a funny thing.
After dropping a very excited Ian off to a very excited Parker, we were off. Just knowing how much they love each other and what a great time Ian has over there makes it SO much easier to leave him for a few hours.

We had a great visit with Dr. H – and yes, that is what we do – we talk and laugh about stuff going on in our lives – we don’t just talk about cancer, treatment and “this.” We did figure out the name of the doctor I had seen at MD Anderson – which we were previously calling “the funny man” because none of us could remember his name and because he is pretty quirky. She needs to chat with him about my “maintenance plan.” Laurie and I decided that the word “maintenance” makes it sound like I am a car with a maintenance schedule to keep – hey, if I can be a fine tuned, well running machine I will take it!

We talked to Dr. H about my upcoming PET scan which she said was really looking forward to seeing the results – score one for Team S. I mean really, to hear her say that she is looking forward to the results as she expects to see negative – NEGATIVE CANCER really hit home with me – she believes as much as I do that this is gone! She didn’t yell that at us, but she could have and I wouldn’t have minded it at all! Also, she told us we can go ahead and plan a little vacation that following week – in my mind that means my current chemo schedule will not continue! So PET scan is on July 22nd and follow up with Dr H is on July 29th – I mean really, I cannot wait for that appointment!

Other than that, same ole same ole – I got zometa for my bones. I feel ok this morning – I am tired but nothing too new on that front! My mom is taking Ian to a small water park today so Eric can get some work done around here and I can rest. Rest is good for me at this point in time!