Mesothelioma Cancer Awareness

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Sunday, April 12, 2009

Cocktails, beads and wires

The first round of chemo went fine. The gave me a "cocktail" of 2 drugs and I was pumped up with so much anti- nausea medicine and steroids that I felt fine all day yesterday and most of the day today. I had a little bit of a fever, chills and hot flashes, but nothing serious.

Starting earlier this afternoon I started feeling a little more sick to my stomach and more fatigued, but I still feel OK. The doctor told me it's probably going to get worse within the next 2 days, but I think I'll be fine. It hasn't been that bad so far, so I'm keeping my fingers crossed. They also told me I should expect my hair to start going "bye-bye" within the next 10-25 days. I've already started looking for hats, scarves and wigs. The kids help me choose, so it's kinda fun actually! We're still keeping a positive attitude around here! :-)

I started working on some jewelery again. It's been a while and I had forgotten how much I like it. I'm glad I had the energy to do it. I'm making something new for Mikie and I'm thinking maybe something for all the girls in the family. I still haven't come up with the right idea, but it's somewhere in there. I'll figure it out.

Well, I better go now. Yesterday I couldn't sleep. I finally was able to around 5:00 am, so I promised Brian I would try to go to bed early tonight. It's already after midnight of course, so...I don't know if I'll be able to. I think I should start taking that sedative the doctors gave me. :-(

Not even gardening...

I always like to plant things in the Spring! I just planted some seeds with Natalie yesterday. She was thrilled! I also bought a rosebush, but I haven't planted it yet.

Unfortunately my doctor told me today that one of the things I should avoid while I'm doing chemo is...gardening! He said there's a higher risk of infection since my immune system is going to have a hard time keeping up during the treatments. Rats! I sure am glad I did it the day before he told me. I'm hoping Brian and the boys can plant the rosebush. :-)

I had my first round yesterday. It was OK. I don't feel any nausea or dizziness yet, I do have a terrible heartburn though, and I feel pretty tired. My doctor warned me that the next 2 days will be the worst. He gave me a prescription to take care of these symptoms, so I should be fine.

We'll see...

Saturday, April 11, 2009

Round One - Us and Them

I had my first treatment today. It was raining and it was pretty depressing.
I felt uneasy and worried.

When I arrived at the clinic of course I had to fill out all the paperwork first. I felt so uncomfortable in there. I really didn't get good vibes from the place.

After all the paper work was done, a nurse came and took me to a room to take my vitals and ask me some questions. Then we went back to the waiting room to get Brian and walked to a different room where my oncologist was going to come and talk to me.

Before the nurse left she put a ...paper (what the heck, PAPER??) robe/shirt on the chair. I assumed of course that I was supposed to wear it. It felt so uncomfortable, it was short and didn't have sleeves, like a short poncho made of paper. I felt so...degraded. Why do they treat sick people this way? Like having cancer and being poked and pricked and probed doesn't already take enough of our dignity away? I was obvious a little sad, and Brian who saw me like this got really upset. He worries about me a lot.

Finally the doctor came in. As soon as he saw me I could tell that he felt apologetic too. "You really didn't need to take your clothes off and wear that!" Really? Then why do you even have those things in here? For those who feel like wearing them?

Anyway, he told me not to worry, everything will be OK blah, blah, and he talked about my cancer and the way he wants to treat it. Brian of course had a ton of questions again. I really don't know how he comes up with all that stuff! Of course it's extremely helpful, because I'm still in such a daze over this whole thing. There are still moments that I just don't feel like talking about it! I want them to do whatever needs to be done, no questions asked. I know it's not the right approach, but that's how I feel, so having Brian with me is really a blessing. He's the one that keeps me sane, and of course...completely informed!

I was a little surprised when the Dr. ,who saw my reaction after having to listen to all the details and statistics, came close, held my hand and told me: "You're like my wife when she had breast cancer. She didn't want to hear or talk about it, she just wanted it out of her." Bingo!

Well after all the talking, he sent a nurse to come and talk to me (some more) about all the side effects that I would probably experience after the treatment. She explained step by step what they were going to do to me, she gave me 2 folders full of information and a cute tote bag to put everything in. She was very nice and friendly. She was also very thorough, so Brian didn't really have a lot to ask this time! ;-) When she was done she took me to the 3rd floor to start the treatment.

When they called me and lead me to the room, my heart just dropped.
Here I was in long shaped room packed with la-z-boy chairs, about 25 chairs total, each with an IV stand on the side, and tons of really old and middle age suffering people (many of them African Americans, since this is their downtown office) sitting miserably in them, with IVs stuck in their arms or chests. Granted they had la-z-boyz, although they were the really cheap kind, but nobody seemed to be enjoying this "luxurious comfort".

My first thought was that it looked like a very old hair salon that a lot of sick people liked to frequent in order to get their haircuts. Then I noticed 2 bald ladies, one wearing a wig and another one with a scarf, so that perception seemed pretty lame on my part.

I felt restless. Is this how I'm going to be in a few weeks? I couldn't help feeling that I really did not belong in that group. I could tell that many of the old folks were staring at me, thinking that I was too young to be there. Some would just nod their heads to let me know they understood this would be hard on me, just like it was hard on them. I could even hear whispers, but now I think that it could have been all in my head. I heard a rush of blood going to my head blurring my vision and I felt disoriented for minute or two.

The nurse that took me in probably noticed the horror in my face too.
She said: "Eeee, let's take you over to that far corner, it's more quiet and your husband can have a seat right next to you too." Thank goodness!

I ended up sitting at the very end of the room and although it was a lot better, I still could not believe what my eyes were seeing! "How could this be?"Brian said. I could tell that he felt so bad! First the paper poncho, now this. He kept apologizing to me and saying how sorry he was. He kept saying "I'm supposed to take care of you, and this is unacceptable! We'll find a different place."

It didn't take too long for both of us to realize what was wrong in this picture. Since this was their downtown office, it must "serve" patients that can only afford the less favorable health insurances, like Medicare etc.

I felt so sorry for those people, and guilty at the same time. I didn't like being treated this way, but at least I have the option to get up and say: "Are you kidding me? You call this "care"? (ironically that's also the name of the clinic!) I'll go somewhere else, and my insurance will still cover everything."

I was ashamed to realize that all those old people and working class adults, who looked so frail and were scared as much as I was, if not more, really had no other choice but to take this "care" and deal with it. No other option.
I turned to Brian and said': "You know, I only have 5 more treatments. It's not that bad. I just want to do it and be done. I really don't care what this place looks like." I think he felt a little better. I know I did.

Later though, when I went to use the restroom, we saw that down another hallway there were... "private rooms". Women with gold fingers on their fat fingers, right by their husbands in their expensive suits, peacefully reading their newspaper or talking on their Blackberries, while the IV dripped in their arms.

At first I was relieved. That's more like it! That's what I'm used to! Let's do this next time! And then it hit me again. Us and them...
Like cancer will treat us better than it treats them, because we get to be in a private room while they push poison in our veins. Malakies (take out your Greek dictionaries.)

It was a surreal experience, to say the least. It certainly was an eye opener and it made me feel quite strange.

Anyway I went back and started the IV again. A young nurse kept coming to take my vitals every 15-30 minutes. She said it's because it was my first time and they were worried about a possible allergic reaction to the medication.

Well, it did feel like there was something nasty flowing in my veins (yeah, I wonder why), but now, several hours later, I still don't have any nausea or dizziness yet, just a really bad heartburn.

They did give me 2 different medications through my IV for nausea etc. before the chemo, so I should be OK for today. If it gets worse tomorrow, my oncologist has already prescribed the same kind of medicine in pills. I'll have to take those for the next 48 hours just in case.

I feel rather tired of course and by blood pressure that's usually between 80-100, is up to 120-130 again. I know it's still withing normal range, but it's higher than my normal. My diastolic though is fine. My heart rate also went up again after the treatment. It was 74 yesterday, but it was 102 this evening.

They did checked my INR (how much time it takes for my blood to clot) which, to my dismay, had climbed up to... 5.8!! Yikes!
It should normally be between 2-3, so of course now they're afraid it might cause bleeding! They told me not to take the Coumadin (the blood thinner I've been taking since I got out of the hospital) for the next couple of days, then take only half a pill (2.5 mg) on Monday, then switch back to 5mg, then 2.5mg again and alternate the dose until Friday when they'll recheck it.

I'm supposed to call them if my fever goes over 100.5 even if it's the middle of the night. I just checked and I have 100.4, I feel chills and I'm all sweaty at the same time. I'll pretend I won't check it again until tomorrow, because I'll be asleep. ;-)

I know that if I call they'll tell me to go to the ER, and I also know exactly how it's going to be there. I'll have to wait 3-4 hours for someone to even glance my way! So, thanks but no thanks, I can sleep in my bed, get some rest, and go tomorrow, if I need to (knock, knock). I'm hoping not.

And this brings us to my other problem. How is it possible for me to be dead tired, but still can't sleep! My doctor gave me Ativan (a sedative to calm me down If I'm too anxious to sleep), but I really don't want to take it. I'm sick and tired of all the medication I have to take, but I feel I still need to give it a try. So, I'll hurry up and wrap up, read the new book I downloaded on my Kindle, a very interesting book called "Beyond Belief: The Secret Gospel of Thomas"

Hopefully I won't be too sick to write tomorrow. The warned me that the next 2 days will be the worst! This will be quite the Happy Easter!

Save me Easter Bunny!

Thursday, April 9, 2009

The nasty medicine that scares hair away and other horror stories...

Brian has been calling around other hospitals, talking to breast specialists and looking for a second opinion all morning. It seems we're on the right path, so I'll start my chemo tomorrow. We'll probably see other specialists before it's time for my surgery.

I'm debating whether I should get a haircut or not. Many people who have cancer say it's easier to deal with the hair loss, if your hair is already short. I don't know. I think I want to keep my hair and bid them farewell as they go, LOL!!

Today I was explaining to Natalie that I will start taking this really nasty medicine and that my hair will not like it at all! So all the hair, all over my body, will want to escape. For as long as I take the medicine, my hair will not want to have anything to do with me and they'll stay away. When I'm done taking my medicine, they'll come back again. She thought it was pretty funny(I think it was the sound effects I made like "heeelp, I'm outta here", that did it.) Then the 2 of us started looking for hats and scarves on the Internet. She was very happy to help me choose the right ones. She's so cute!

I hope the kids won't worry too much when they see me being sick after each treatment. I try to talk about it with them, and answer all their questions. I try to make it sound that it's not such a big deal. From their reaction so far I think I've done a good job and they're going to be OK. They know what to expect, so I'm hoping it's not going to be such a big shock to them. I joke a lot about it, so David and Darian following my lead I guess, offered to give me an afro wig they bought for Halloween! I guess everybody's spirits are still high! :-)

Well, that's all for now. I'll keep you posted as more things come up.

Triple Negative - - -

Soooo, I have triple negative breast cancer after all. I feel numb, a little scared, and sad. Maybe a little angry too.

Brian and I started looking on the Internet for hours to find info. The best ones we could come up with were the John Hopkins Hospital in MD, and the Ireland Cancer Center in Cleveland.

Last Monday, right after my CAT scan, I was admitted and stayed in the hospital until Friday. I was treated for a pulmonary embolism, put on an heparin IV, a blood thinner, and now I have to take a pill for keeping my blood thin on a daily basis for the next 6 months. The clots will eventually be absorbed, but we have to make sure that I won't have any new ones pop up.

Of course all this delayed my cancer treatment for about a week. I finally went to see the oncologist this Tuesday. I really liked him. The tests for metastasis came back negative, so this is good news, but the bad news is that my cancer is a rare form of breast cancer, which unfortunately will limit my options for treatment.

The new and more successful treatments target cancers that have estrogen and progesterone receptors. Mine does not have those receptors. It's called a triple negative breast cancer, which is more aggressive and "likes" to metastasize in other areas of the body.

So it's good that I'm clear so far, but my chemo will have to be stronger to catch and hopefully eradicate any dormant cancer cells "visiting' my other organs. :-)

I'm starting my first treatment tomorrow. I expect I'll feel sick, drowsy, dizzy and tired for a couple of days after, and my next treatment will be in 3 weeks. I'll have to do a total of 6 treatments, and then have the surgery sometime in the summer.

We're still looking for a second opinion. We have contacted a great cancer research facility in Cleveland that has just started a trial for a vaccine for triple negative breast cancers. We've also talked to a few other breast specialists and they all agree on my current treatment plan. So, I guess I'll finish my chemotherapy here, and then look at my other options after that.

That's all my news for now. I'll keep you posted on how things develop here.

Tuesday, April 7, 2009

The Oncologist

I went to see the oncologist today. I really liked him! Many people had told me that the most important thing is to have a good relationship with your oncologist and now I can see why. Both Brian and I were very impressed with him!

I will still seek a second (and maybe even a third) opinion when it's time to make a decision about the surgery. I'm glad I still have some time to think things through. I start chemotherapy on Friday.

The doctor told me that I will have some nausea and dizziness for a couple of days after each treatment, and he gave me some medicine that will help. I'll have treatments once in three weeks and I'll have to do 6 rounds. After that, sometime this summer, I will have the surgery too.

I try to keep my spirits up. I haven't been getting much sleep lately. My doctor gave me a sedative a few days ago, so I think I might take one tonight. I'm starting to get pretty tired during the day.

Monday, April 6, 2009

The day before tomorrow

I came back home on Friday afternoon. My INR was finally within normal range (2.4) so I was discharged.

My computers did not have an Internet connection inside the hospital, so I couldn't write much, although I did keep some notes here and there.

Sally left on Saturday noon (she came late at night on Tuesday), so I really didn't have much time to see her, but I'm so grateful that she took care of the kids while I was in the hospital. It really made a difference for the kids to have her here while I was gone.

I have another appointment with my breast surgeon and my oncologist tomorrow morning, so I'm pretty sure I'll find out when I'll be starting the chemo. I try to take it easy and not get too tired. My pulse is not so high anymore (it had reached 150 on Friday and was about 120 Saturday). I don't feel so out of breath all the time, so that's a good sign.

Brian has been working from home since I got sick so he could keep an eye on things, but we're thinking of sending Natalie to a preschool when he goes back again. This way I can get some rest during the day. I'm thinking that it's going to cost us a pretty penny, but we have to make it work because I could really use some rest. It will be good for her too.

I'm not so worried about tomorrow. I just want to finally see my pathology report and face the ugly beast.