New Hope

Sometimes all you need to feel encouraged again, is a simple glance that shows you that the person you have chosen to trust with your own life is still in the game and hasn't thrown in the towel.

It's been a couple of months now that I've been getting this feeling of defeat from my oncologist in Cincinnati. I could read the frustration in his face every time he'd ask me to show him my chestk and the realization that chemo didn't really do anything was apparent to both of us. The nodules kept growing, new ones started popping up, despite all the treatment and all the different medications he had tried on me. I felt the same frustration too, but I guess I expected him to be the one to come up with new things to try. Instead he looked as tired as I felt. My cancer was spreading on my skin, but there was nothing we could do! We were running out of options!

I felt numb, depressed, desperate even, but at the same time my determination to fight this thing became higher than ever! I have a wonderful husband whom I love with all my heart, and 3 adorable kids that still need me. I want to be with them for a very long time. I want to enjoy loving my husband and seeing my kids flourish into adulthood. I'm going to chase this darn disease out of my body! I will fight and I will win! Now, if only my doctors felt the same...

I drove six and a half hours to Zion, Illinois last night to see Dr. Dennis Citrin who is a breast oncologist at the Cancer Treatment Center of America. Last time I saw him was in May. My cancer was stable and my skin didn't look as bad as it does now. I kept a little hope in my heart that maybe he would have an idea of something else that could be done.

I have to say that just listening to his Irish accent cheered me up! :-) When the words "highly treatable"came out of his mouth I felt my heart skip a beat and my ears started ringing. He actually told me that my cancer was treatable and it was just a matter of finding the right medicine! Sure the other ones failed to stop it, but he wants to keep trying, find a different one, and combine it with radiation. Not only that, he wants me to participate in a clinical trial for PARP inhibitors, which are the new hope for triple negative breast cancer.

I know I'm not saved, by any means. I still have a bunch of tests that I need to have, more results and of course decisions to ponder upon, more treatments that will make me physically ill and weak, but it sure helps to know that there are things to do, and that hope is still there! Most of all, it feels good to know that my doctor has seen cases like mine before and he wants to keep trying. It's not over yet!

I will have more news tomorrow, when the test results are back. I'm praying that the PET scan, which I will have in a few hours, will show once again that the cancer is contained and it hasn't affected any vital organs. Either way, I feel that I'm at the right place at the right time. I can trust my doctors again, and feel that I'm being taken care of. What more could a cancer patient want! Hmmm.....the cure to cancer, maybe? ;-)

I've been feeling somewhat disappointed. I'm in pain, my meds are running out and I have to wait for my insurance to approve more, or else I'd have to pay them full price.

I can't get it out of my mind that people around me have started to give up on me.
When I tell B. he says it's just an idea that got stuck to my mind and that he does not perceive it this way.

I don't know what else to do. There's nothing worse than feeling you're totally hopeless and that there's nothing you can do. I feel I still have the fight in me to shoo this away from me, but the options that doctors give to me, stink, at best!

When I went to my oncologist on Friday he looked at my chest with an almost disgusted look on his face, then I could tell he was bummed and disappointed. Well, the bad news is that chemotherapy all these months did nothing. Of course it had decreased the other cancer cells throughout me body, which is good and I'm so grateful for. Comparison of both PET scans showed that cancer cells at the same spots throughout me body have the tendency to decrease, which is awesome!!

But I still have to live with the discomfort of the burnt to a crisp radiated area on my chest. The scar tissue there is so dense that there's very poor blood circulation. All this chemo was for nothing! It couldn't get through the scar tissue!

Now I'm waiting for the radiologist to confirm our next appointment. She will decide if we can treat the ugly beast with local-on the spot radiation. If not, my oncologist has already given me a prescription for a chemo cream that, from what I heard him mumble, is going to live my skin raw and sore.

I have a hard time sleeping. There's no elasticity to the skin on my chest making it painful to move or turn around. And it's only spreading and getting worse.

I wish I could put an end to this story. A happy end preferably! I woke up this morning so depressed, my first thoughts were "There has to be more we can do about this. I want to fight! It's skin cancer for heaven's sake!" I went straight to Brian's office and asked him if he had a second to talk. I know he really didn't, but he was kind enough to say yes and we talked.

I needed to hear the voice of logic. Sometimes I get so emotionally overwhelmed that common truth and logic just doesn't register. I'm glad I can talk to him and he can bring me gently down, the way only he can. I'm so grateful to have him!

A couple of hours later he climbed in bed with me, and held me while I was crying in despair of not finding a solution for all this. There never is. Cancer changes your life and the life of your family forever! Nothing can be normal again.

My daughter who is 5 and a half now, remembers now, that I used to do a lot more things with her, like take walks and go to the park, or play games. She asks me why don't we do those things anymore and I have to explain to her that I'm really sick. She puts her caring hat on and starts playing doctor with me. She's always the doctor who makes me feel better. She's also the only one who insists on looking at my scars! She doesn't mind at all! She just whines that I don't take baths with her anymore and that it used to be so much fun when we did.

My kids have to accept the fact that mom is sick and she feels weak most of the time. She can only do one thing at a time and then she has to rest.

I'm glad though that no matter how tough things get, I'm there, they're with me and we all pull together. I've had days where I was so out of it, B was gone on a business trip and all I could do in my Oxycontin medicated existence was order pizza and then get back to bed. But the kids will come to me, sit around my bed, we talk, share stories and crack jokes. Lot's of times we just all sleep together in the same room. One on the floor, one on the recliner, one with mom on the bed. It's like camping, only indoors! We all love it! I'm so glad I kept them here this summer!

And now that I think about it, I am blessed because my kids are healthy and good and I'd rather suffer 10 times worse than have one of them to deal with 1/10 of what I'm going through.
And the same goes for B. I'm just grateful that he's alright.

That's all my ranting for tonight. My bones hurt and I'm tired, so I think Ill be able to sleep.

Sweet dreams!

A Mess...

I have witnessed a few times in my life the pain associated with the loss of a loved one. The pain of children who lost a loving father and miss him like crazy, or the painful struggle of a mother trying to grasp the reason why their son was killed and taken away so abruptly, while she was left here dealing with feelings of guilt for the rest of her life. Everybody wants to know why, but I believe that those questions will remain unanswered until we face our own end.

I often read about people who have had a near death experience and have lived to tell the story. In almost all cases someone they felt very close to is there to greet them and, luckily for them, send them back. I don’t know what to say about me. I’m thinking that my time left here might not be too long. When I think about if I will have anyone there, on the other side, I get the feeling that I will be lonely. Who’s going to be there for me? I think my options would be very limited.

Don’t get me wrong, I’d love to see my grandparents again, or a few friends that have passed on, but something tells me that my purpose there would, by necessity, be different. I feel that I would have to take the role of the one greeting others who would need guidance when they cross over. I’m not so thrilled about being lonely there for who knows how long, but I know that role would fit my personality. Or maybe, and I don’t mean to be creepy, I could be watching over the people I love and make sure that they’re taken care of.

So then, here comes the other worry. Will I, as a spirit, be trapped here, trying to watch over my children and my husband? I don’t know how I would ever find the strength to let go and move on to the spirit world, when I know that everyone I care about and love deeply will still be here. Maybe I could get free passes to visit every now and then, but I don’t know how things really work over there.

Isn’t it amazing, the things that I think about on a daily basis? I’m so close to death and I know it. Maybe not time wise, hopefully, but the bottom line is that I think about death every single day. Sometimes it scares me, sometimes it makes me sad and sometimes it just baffles me. I have so many unanswered questions! I just wish that I will be able to watch over my family, even if I’m not physically here, one way or another. The truth is that I’ll be sad if I miss on all the important things in their life! I would want to be here and be a part of it all, not just a spectator.

What a mess…

I always struggle with my feelings when it comes to missing a loved one that has passed on, and then at the same time knowing that they are a lot better off where they are now, even better than we all are.

It's sad how we are left with memories of those people who once were such a big, sometimes even small, part of our lives. I'm sure we all miss them, but I also strongly believe that they're in a better place, surrounded with everything and everyone that makes our journey here on Earth a worthwhile one. They found out the truth, the end, or maybe even the next step in a series of stops that consist the purpose of a still unknown to us plan.

I truly feel sorry for those people who believe that we're only a bunch of muscles and bones and that when we're dead the ground that covers us just consumes us and there's nothing left. I can understand how some people don't believe in God, I respect that- there are many unanswered questions, but how can you not see that there's so much more to your own self than a body that functions following a random number of chain reactions. It would be such a waste of intelligence, and by that I don't mean common smarts, but a waste of an intellectual existence. It just does not register!

Wishful thinking? Maybe... I kinda like it though. :-)

Remedies and Matzounia

A lot of people comment on what a good attitude I have (at least some of the times), which really makes me wonder. The times that my attitude is not "up there", am I really harming my chances, or do I deserve to be in so much pain? I decided that no.

Many people who are unaware of what a heavy burden it is to carry the sign that states you are a cancer patient, think that keeping your spirits up, even when you're in the most horrible of pains, will somehow miraculously take away everything bad and turn it into positive. I'm also sick and tired of hearing how having faith makes everything better. Well, it doesn't. The pain is still there, the worry over what's going to happen to my family is there, the fear about the uncertain is there.

You learn lots of lessons through out this all right, one of them being that you're in this alone. No one can really help you out. And believe me everyone will have their own little theory of what the right thing to do is. One will say you should eat healthier, I agree, but how come there are so many people that live on crap and never have to go through this? Others will say, you should try taking this or that health supplement. I do! I take a bunch! Guess what, cancer still there, immune system, not doing so hot lately. Let me think... what else, oh of course, green tea, asparagus, flax seed oil, you name it someone has said that it helps keep you healthy.

Well, I made up my mind today that ice cream beats cancer's bum and it also cures hives and shingles. I ate ice cream two days in a row and I'm feeling a lot better today, plus my rash from shingles, an incredible thing, it's getting so much better!!

I'm a believer, so you should be too. Let's hear what other known, or unknown remedies are out there.:-)

I feel sick.I'm dizzy and in addition to my usual pain in my spine, my muscles hurt as if I ran a marathon. What really happened is that I had to park my car kinda far when I went to David's band concert 2 days ago. I had to walk for about 5 mins to get to the auditorium.

It was sunny and I was hot. Soon I could see David and Natalie walking way ahead of me as I was slowing down more and more with each step. I could feel that I had difficulty catching my breath. Once again I was reminded of how important it is to have the appropriate balance in order to have everything functioning normal in our bodies.

Chemo causes low red cell counts, among other unpleasant things. My low hemoglobin, translates to less amount of red cells "trapping" valuable oxygen. Less oxygen plus low platelets and low hematocrit, means I'm anemic so I get dizzy and I huff and puff like an old train engine when I walk over 5 secs. Great, isn't it!

My life has changed so much ever since this has happened. It's been a year and a half now that I've been going under treatment. I feel my body slowly shutting down. Every time a new symptom pops us, I feel I've lost another fight.

Now I'm in bed, barely having the strength to get up and do anything. I just want to rest, but I feel guilty, as if I'm giving up while I have so many people depending on me. That on its own scares me the most. What will happen to all those people who depend on me? I don't have the right to rest, I have no right to give up.

I'm so tired...

I had a lousy day. It started with a doctor's appointment that went well, but managed to send my gears in overdrive. All the "but if" scenarios have been running wild in my mind ever since I heard the dreaded words again. Aggresive, metastasis, Stage IV.

I'm sitting here thinking "Am I dying, and nobody is telling me? I feel weak and I look tired. I've lost 40 pounds and I don't feel like eating much. I'm yellow with shades of green, dark black circles under my eyes. I'm bald and I'm loosing my eyebrows and eyelashes a lot sooner than last time. My spine hurts and I need to be constantly taking medication to control the pain. This is my new "normal"

But when I put my make up on, by the way it takes at least 4 layers of foundation to achieve a natural color at this point, I look at myself in the mirror and say "hey, it's not that bad, I feel fine!" And it's true! I do get down emotionally every now and then, but overall I'm fine! Today was a bad day, but I've had weeks in a row being fine. More than fine, awesome!

So, note to self, there are always going to be bad days, I just have to keep going. I can't rely on what's going to happen in the future. It's too far ahead and I don't want to waste my time. My focus should be on the here and now. On day at a time, bringing one foot in front of the other. This is the only way.

I’m in my bed at the hotel, trying to get some rest. Brian is already asleep. He’s pretty sick with a cold, so he’s been feeling lousy all day. I feel really sorry for him. I wish there was more that I could do to make him feel better. It’s a good thing we have separate beds! It would be really bad if I got sick now. My immune system is shot! We both wash our hands and use hand sanitizers like crazy.

I had a busy day at the hospital, which looks more like a hotel, by the way. Everyone there is really nice and cheerful; one wonders where they find the courage. Looking around at the other people there, you can easily tell who the patients are and who the caregivers. First, we all wear personalized tags with our names on. They all have a nice big “P” for patients and “C” for caregivers.

Of course the dead giveaway is the fact that most patients have no hair, their color is yellow-green, and some are in wheelchairs. I asked Brian when we got back “Do I look as sick as those people?” He said I didn’t, but I’m suspecting he was trying to be nice. He did say though that when we were there he was thinking about how “beautiful” I look compared to the others. Should I believe him?

I met the oncologist after lunch. He was very kind and seemed trustworthy and knowledgeable. We went over my medical records, and then he examined me and told me that he wanted to run a bunch of other tests that would provide more info about my condition. Very important on that list are the PET scan, that tells you where and if there are more cancer cells in your body, and the genetic test that will show if my cancer is hereditary, or if I’m the first lucky one to have mutated DNA in our lineage. He also prescribed a stronger pain medication that is extended release, so I can manage my pain better.

I had my first blood tests (10 vials total) and an EKG right after. I felt lightheaded and tired. When the first results came back, the nurse came and told me that my hemoglobin was low (what’s new?) and that the doctor wanted me to have a blood transfusion tomorrow morning. Crap! I hate that!

They gave me my schedule for the rest of the week. It looks like Wednesday is going to be another busy day. They want to be done by Thursday so I can have my treatment on Friday, if I choose to. I’m not sure if I’m going to do it or not.

I don’t know why, but I miss my doctor in Ohio. I have this crazy thought that I would really like him to be with me right now. What can I say, I really trust the guy! It might be the fact that he’s the first doctor since I’ve moved here to actually give me his cell phone number, LOL!! I sent him a text once and he called me back within minutes. Plus he knows his stuff and he’s always up to date about current treatments and researches.

So…what am I doing here? Good question! I think tomorrow I’ll have a better idea of the different approach they claim to have here. I have appointments with a nutritionist, a pain management specialist and a naturopathic consultant (he will suggest natural supplements and treatments). I will also have a “mind & body” session with a therapist that teaches you how to reduce stress and focus on happy thoughts. It sounds pretty ridiculous right now, if you ask me. I’m thinking I might try acupuncture too. What the heck, I’ll try anything at this point!

Well that’s all there is for now. It’s late and I have to get up at 6:00 am. I’ll let you know how things go.

What can I say? I’ve been duped! I really thought I would be done with cancer and its treatments after December, but oh boy, don’t I feel stupid now! I was honestly ready to never return on this blog again, although I have really enjoyed pouring all those thoughts and feelings out. I thought it would be a sign of breaking free from the disease and I felt an urge to never look back after “beating” cancer in the first place. Note #1: Things never go as planned, so you always have to leave room for the unthinkable to happen and to be humiliated for not thinking about it in the first place. I had to learn the hard way.

I finished my radiation treatments on Dec. 28, right after Christmas. The girls at the radiology department even gave me a certificate that said that I passed, congratulating me for beating cancer! So what the heck happened? Why was I back at the doctor’s office only a few weeks later, getting another biopsy that would eventually confirm that my cancer was still there? Grrrr…

To my utter surprise and disbelief, I had to start chemo treatments again at the end of March. My cancer was sill there from what all the scans have shown. After all those treatments, another battle would have to begin once more this year. I was so ready for a truce! Why did it have to happen this way? I really needed a break!

Well, to cut a story short I started chemo again, I just finished my 3rd treatment and I’m supposed to have 6 total, so 3 more. I will have more radiation after that, electron beam radiation, and we’re still experimenting on cocktails. I have tried 2 different ones, so far.

I got an extra opinion from the Cancer Treatment Centers of America in Chicago. I’ll keep you posted on how that goes. I don’t anticipate posting as often as I did last time. I feel the need to focus on my family instead and spend less time shutting everyone out and isolating myself. We’ll see…

I've been thinking...

I read an article yesterday about a recent research on Triple Negative Cancer. There were many interesting facts and I found a lot of good advice to follow.

One thing though that caught my eye, made me feel really nervous. This oncologist was talking about a new drug that is now being used together with chemo (I didn't use this) and has increased the expectancy of a recurrence to 6.8 months instead of 3.3!! Come again?? Did I read this right? Do I really have an average of 3.3 months before this thing sprouts somewhere else?

I spent almost my entire night thinking of dying. Would I be scared? No, I concluded, it will be fine. But when I think about the kids...that's a different story.

Brian was able to ease my fears a little bit. The fact that he made the effort, encouraging me and holding me in his arms, was more important to me than the actual words. What words could really comfort a person facing death?

It was 4:00 am when I finally gave up on the possibility of going to sleep on my own and took a sleeping pill. I finally closed my eyes around 4:30 am. I woke up this morning late. Brian was already up working and he had already taken the kids to school.I felt so blessed, but also guilty.

My mind started wondering about all those ugly thoughts that occupy my mind lately. Not just about the cancer, but mostly about my future, my worth as a human being, my place in my house, my family, the whole world. Do I have any value? Am I just spent? Do I have anything to offer still? Do I matter?

So often people associate their value on what other people around them, especially loved ones, think of them. If my spouse thinks I'm pretty, then I'm confident. If my boss says I'm a good employer then I'm successful, if my parents say I'm a good girl then I'm in the right path.

Yesterday I stopped and thought a lot about this. I believe that I have a purpose here on earth. I don't believe I came here after a series of coincidences or random acts. I believe that there is a greater power that created us. He loves us and he oversees things. I also believe that I was made to look after his own image. I believe he handpicked me and placed me here for a purpose. He chose me, and he chose my husband and our kids to be together on this earth and whatever follows after it. Most of all, he loves me, no matter what, and he is there for me in my darkest hours, when I humble myself and ask.

I get my value from him, not anybody else. If he says that I'm worthy to be here at this place and this time, who am I to argue? Do I loose my value, just because bad things happened to me, or because I made a few mistakes? I don't think so. If he says that he loves me, why wouldn't I feel worthy of love? If he says that he forgives me, why should I be so hard on myself? If he says that I'm the best of his creations, why would I feel so down on my self?

I think we should recalibrate. Find our worth and value where it truly lies. With our Heavenly Father and not with those around us. We should put our chin up and continue down the path he has for us. Head held up high, no matter how battered we are. He still loves us, he still chose us, we are still his children and he will provide for us always.

:-)

Freedom!

It’s 7:45 am. All three kids have gone to school and B to work. I sit on my bed and breathe in the silence in the air. What an incredible feeling! For years now I’ve always had at times the youngest of my kids around my skirt. This is the first time that they all go to school.

I don’t know what to do with my new found freedom. Many things have already crossed my mind. I think about maybe volunteering at the hospital, at least this is my top preference for now, but then I second guess myself. Is it too soon to be in an environment full of sick, sometimes dying people? It hasn’t been that long since I considered myself one of them. So I think, and rethink, but for now I haven’t decided yet. I used to volunteer at the school before I got sick, but we’re half way through the school year, the positions are already filled. Maybe find a job somewhere, but where?

I swipe away the thoughts and try to concentrate on what I should do right now instead. Maybe I should clean up the family room and the kitchen a little bit, maybe my bedroom too, where everybody’s stuff seem to end up in these days. But I look at the clock again and change my mind. It’s not even 8:00 yet! And then I find it! I will stay in my bed and enjoy a few moment of doing nothing. Then I’ll have to do something for myself, a nice hot bath, or walk on the treadmill first and then take the nice hot bath, then drink a yummy hot chocolate by the warm fire of the fireplace while reading a good book.

This day will be mine to savor every free minute of it. So, I’m going to snooze a little bit more, and go on to pamper myself right after. You should probably do the same too. We all deserve it!

The End

It's been little over a week since I finished radiation. As expected, my skin all around the incision is red, dry and it hurts like heck. It actually looks like cooked flesh, really disgusting! I've been taking oxycodone, a lot of it... All it does is make me feel loopy, and takes the edge off the pain.

My last radiation was on the 28th. Brian's family was still here, so we all went out for dinner to celebrate...the big event. It still hasn't registered to my brain.
It feels strange not to have to go for treatment every day. I started at the beginning of October! I would almost say I miss it, but my pain keeps me well grounded! :-)

I'm thinking I should close this blog and start a new one. This one has served its purpose. It has been a way for me to vent during my entire treatment. Now I don't really want to talk about cancer anymore. At the end I did feel that I had reached my limit, now I'm glad it's over. I want it all behind me as I start the new year, hopefully a better one.

I am so grateful to all of you for reading this blog and keeping me in your prayers. I know there were times that it was only those prayers that carried me through. I'm so thankful for all those e-mails I received giving me hope and helping me hang in there, and all the help from family and friends who came to visit. It's great to have people that care about you and are willing to go the extra mile to keep you going too. I couldn't have done it without you.

That's all for now. I'll be back with any updates, good or bad. :-)