I got a LOT of feedback about my last post. I got e-mails, FaceBook messages, calls all of love, prayers and encouragement. I want to thank everyone who just re-doubled their prayers.
I'm much better now. Saturday was the worst of it. I've slowly improved since then. (Big shoutout to my MOM!!!) I just wanted to share with everyone what was going on in my head at the darkest of times. Please be assured that in as much as I sometimes go there, I don't live there. I'm just telling you that there are times of weakness but even at the bleakest of times, I have never given up on my life or on my faith.
UPDATE: I've told my doctor about my neuropathy (pins and needles on my hands and feet). We're scheduling another PET scan in the next couple of weeks. She says it's to check if we can scale back the treatments. I'm just visualizing a clear PET scan. I'm opening myself to the possibility of this miracle. (Dean, you're comment just encouraged me!!!)
Again, Thank you, all!!! Please don't stop believing. I believe I will have my miracle soon.
Friday, August 21, 2009
Sunday, August 16, 2009
Tired in body and spirit
That is what I posted in Facebook yesterday. I knew I'd get a lot of prayers and love my way (and I did).
Yes, I had another treatment. Was it difficult? Yes. Not more difficult than others. I had nausea. Not much actual vomiting. Major fatigue. The new thing is this neurotoxicity. I feel pins and needles in the ends of my fingers and the bottoms of my feet. I've never felt that before. The doctor has told me about it. In almost four years, and this is the first time I'm feeling it.
It does scare me. I'm just scared that my body cannot recover as it used to. It seems there is so much toxins in my body that I'm having trouble clearing. I'm going to try an epsom salt bath. Although I was warned that since I'm so depleted, I shouldn't stay too long.
My accupuncturist was a great help yesterday. He listened as I told him how tired I was. I did not know he was also a homeopath. He gave me some good stuff that uplifted the spirit.
-----------------------------
Let me share how bad it got yesterday for me to type my Facebook plea. I don't like feeling this way... down and depleted. I fight with prayers and positivity and I reach out to friends and family who lift me up. (Cowsin!!!)
I've learned that even if I don't like that I feel negative, I need to express it and acknowledge it then let it go.
-------------------------
I'm tired of chemo. I don't want to do it anymore. It would be a little easier if there was an end in sight, but I'm on an indefinite treatment. And now this neurotoxicity...
It feels like there is a heavy load on my body that keeps getting heavier every treatment. It squashes my spirit. It's easy to be positive when you are feeling good. But I'm tired... very tired...
You know that I cannot stand to be in my doctor's office? That space is so offensive to me, the thought of me having to be there just makes my stomach heave. Even now that I'm writing about it, I can smell the fumes. But I'll have to talk to her soon. I'll probably invite her outside.
I'm tired of having to be strong. I don't have anything left. All I can do is offer it up since I have nothing left.
Yes, I had another treatment. Was it difficult? Yes. Not more difficult than others. I had nausea. Not much actual vomiting. Major fatigue. The new thing is this neurotoxicity. I feel pins and needles in the ends of my fingers and the bottoms of my feet. I've never felt that before. The doctor has told me about it. In almost four years, and this is the first time I'm feeling it.
It does scare me. I'm just scared that my body cannot recover as it used to. It seems there is so much toxins in my body that I'm having trouble clearing. I'm going to try an epsom salt bath. Although I was warned that since I'm so depleted, I shouldn't stay too long.
My accupuncturist was a great help yesterday. He listened as I told him how tired I was. I did not know he was also a homeopath. He gave me some good stuff that uplifted the spirit.
-----------------------------
Let me share how bad it got yesterday for me to type my Facebook plea. I don't like feeling this way... down and depleted. I fight with prayers and positivity and I reach out to friends and family who lift me up. (Cowsin!!!)
I've learned that even if I don't like that I feel negative, I need to express it and acknowledge it then let it go.
-------------------------
I'm tired of chemo. I don't want to do it anymore. It would be a little easier if there was an end in sight, but I'm on an indefinite treatment. And now this neurotoxicity...
It feels like there is a heavy load on my body that keeps getting heavier every treatment. It squashes my spirit. It's easy to be positive when you are feeling good. But I'm tired... very tired...
You know that I cannot stand to be in my doctor's office? That space is so offensive to me, the thought of me having to be there just makes my stomach heave. Even now that I'm writing about it, I can smell the fumes. But I'll have to talk to her soon. I'll probably invite her outside.
I'm tired of having to be strong. I don't have anything left. All I can do is offer it up since I have nothing left.
Saturday, July 11, 2009
Big splash
Today is Burke's 7th birthday and we had a pool party. We all had lots of fun. We had the whole place to ourselves. There was a big slide, a small wading pool, a big pool and a hot tub. We had a lot of friends help make it a great party.
Yes, I was able to swim. My wound had dried up enough for me to get in the water. I wasn't in the water long. Really, it was just to catch Burke as she came down the slide. But I loved it. I've missed the water. I used to swim competitively when I was young. It was really killing me that I could not get in the water to teach Burke. Now I can.
Yes, I was able to swim. My wound had dried up enough for me to get in the water. I wasn't in the water long. Really, it was just to catch Burke as she came down the slide. But I loved it. I've missed the water. I used to swim competitively when I was young. It was really killing me that I could not get in the water to teach Burke. Now I can.
Friday, July 03, 2009
Less of a cyborg
In November, they put in a PleurX catheter in my lung to help with the gathering liquid. Since then, I have not been able to draw much liquid at all. Since my PET scan showed vast improvement last April, it was decided that the catheter can be removed.
Yesterday, it was taken out. It was just an outpatient procedure.
I remember last November, when they had just put it in, I told myself, this will not stay long. I want to swim in the summer. Guess what, folks... I'll be in a bathing suit before long.
Yesterday, it was taken out. It was just an outpatient procedure.
I remember last November, when they had just put it in, I told myself, this will not stay long. I want to swim in the summer. Guess what, folks... I'll be in a bathing suit before long.
Friday, May 01, 2009
Brief History 2009
I've updated my Brief History with the latest stuff...
In Dec 2005, I had a routine physical just coz I turned 30 that year. I was expecting a clean bill of health. But I did mention to the doctor that my father had a heart attack in his late 30's so they did an EKG.
Everything was fine except for the EKG. There were some abnormalities that they could not even determine with a sonogram of the heart.
Jan 2006 - So I saw a cardiologist. She did a CT scan of the heart. Turns out my heart was great. Although my lungs had cancer. So a pulmonologist verified it to be Stage 3B Non Small Cell Lung Cancer (Bronchio Alveolar Adenocarcinoma). It was inoperable since I had it in both lungs and it had spread thru the lymphatic system. (Usually a cancer grows in tumors. Mine had spread into thousands of tiny little tumors all over the lungs.) I started to see my oncologist.
I started treatment Feb 28, 2006. My first regimen consisted of Cisplatin and Taxotere on a 21 day cycle. I receive treatment at my doctor's office - Virginia Cancer Care in Loudoun county.
May 2006 - I had a CT scan that showed no change. My doctor and I decided to move to a gentler regimen so that I can work. My new regimen consisted of Carboplatin and Gemzar. Since the side effects were not too bad, I started to go back to work full time.
Aug 2006 - My doctor got insurance authorization to start me on Avastin.
Jan 2007 - PET scan showed no significant change. Again, we changed my regimen - Tarceva (since it has shown promising results on young, non-smoking Asian females) and Avastin. I'm not on chemo anymore. I'm on targeted therapy.
May 2007 - PET scan showed that the primary tumor has doubled in size. And that the spread of the cancer is now more dense in the right lung than before. We're changing the regimen again. Avastin and Alimta (chemo) every 21 days.
Jun 2008 - PET scan showed that the disease was stable.
Aug 2008 - Problem: Liquid in my lungs. Doctor extracted with big bad needle. (Thoracentesis)
Sep 2008 - Liquid in my lungs return with a vengance. Another visit to the doctor with the big needle. (Thoracentesis)
Oct 2008 - PET scan showed disease was growing fast. There are 2 things I needed to do. 1) Take care of the liquid in my lungs with a pleurodesis. 2) Change medication. After a year and a half, Avastin and Alimta had run it's course.
Nov 2008 - Instead of getting the pleurodesis, the doctor put in a PleurX Cathether.
Dec 2008 - New chemotherapy: Cisplatin and Navalbene on a 28 day cycle. Very difficult.
April 2009 - PET scan shows vast improvement in size and activity. Slight change in dosing: Instead of getting Cisplatin all in Day 1, it is split to 3 days so that I can be given more fluids to help with the side effects.
In Dec 2005, I had a routine physical just coz I turned 30 that year. I was expecting a clean bill of health. But I did mention to the doctor that my father had a heart attack in his late 30's so they did an EKG.
Everything was fine except for the EKG. There were some abnormalities that they could not even determine with a sonogram of the heart.
Jan 2006 - So I saw a cardiologist. She did a CT scan of the heart. Turns out my heart was great. Although my lungs had cancer. So a pulmonologist verified it to be Stage 3B Non Small Cell Lung Cancer (Bronchio Alveolar Adenocarcinoma). It was inoperable since I had it in both lungs and it had spread thru the lymphatic system. (Usually a cancer grows in tumors. Mine had spread into thousands of tiny little tumors all over the lungs.) I started to see my oncologist.
I started treatment Feb 28, 2006. My first regimen consisted of Cisplatin and Taxotere on a 21 day cycle. I receive treatment at my doctor's office - Virginia Cancer Care in Loudoun county.
May 2006 - I had a CT scan that showed no change. My doctor and I decided to move to a gentler regimen so that I can work. My new regimen consisted of Carboplatin and Gemzar. Since the side effects were not too bad, I started to go back to work full time.
Aug 2006 - My doctor got insurance authorization to start me on Avastin.
Jan 2007 - PET scan showed no significant change. Again, we changed my regimen - Tarceva (since it has shown promising results on young, non-smoking Asian females) and Avastin. I'm not on chemo anymore. I'm on targeted therapy.
May 2007 - PET scan showed that the primary tumor has doubled in size. And that the spread of the cancer is now more dense in the right lung than before. We're changing the regimen again. Avastin and Alimta (chemo) every 21 days.
Jun 2008 - PET scan showed that the disease was stable.
Aug 2008 - Problem: Liquid in my lungs. Doctor extracted with big bad needle. (Thoracentesis)
Sep 2008 - Liquid in my lungs return with a vengance. Another visit to the doctor with the big needle. (Thoracentesis)
Oct 2008 - PET scan showed disease was growing fast. There are 2 things I needed to do. 1) Take care of the liquid in my lungs with a pleurodesis. 2) Change medication. After a year and a half, Avastin and Alimta had run it's course.
Nov 2008 - Instead of getting the pleurodesis, the doctor put in a PleurX Cathether.
Dec 2008 - New chemotherapy: Cisplatin and Navalbene on a 28 day cycle. Very difficult.
April 2009 - PET scan shows vast improvement in size and activity. Slight change in dosing: Instead of getting Cisplatin all in Day 1, it is split to 3 days so that I can be given more fluids to help with the side effects.
Thursday, April 30, 2009
April 23 PET Scan
I apologize for disappearing for a while. We just went through a financial crisis that thankfully has resolved itself. (Whew!) I'm now going back and filling in all the details. - xyz (6/10/09)
April 23 - PET Scan
When my doctor noticed that I was really having difficulty dealing with the latest treatments (real bad nausea, fatigue, etc... due to Cisplatin/Navalbene combo), she decided to order a scan to see how I was really doing. My disease has no other markers that can be tracked outside the scan so I have to wait months to see how the treatments are affecting me.
GOOD NEWS!!! There was significant shrinking and activity all around. Compared to last October's scan, there was vast improvement. Last October, they noticed lots of activity in the lymph nodes around the right armpit area. They had said that the disease may have spread there. This time, that seemed to have cleared. I may have been fightling off an infection at the time.
So, I'm still on the same medication. My doctor did adjust how the dosage was given. I used to get Cisplatin all of day 1 which made me sick for about 10 days or so. She split it into 3 days. That way, she can give me more fluids to help with the nausea. This really helped me. Nausea isn't as bad.
I'm continuing to see my accupuncturist (thanks to my friends!!!), chiropractor and my Reiki master. All of whom help me in ways I can't express...
-----
I was really happy to hear the great improvement to my health. But it really bothered me that I had to continue with the same medication because of how difficult it is. It really wipes me out. Some nights, I find myslef whimpering in my mother's arms. I was hoping that I would somehow move on to another gentler medication. Everytime I had to go to treatment, I felt like I was putting my hand on the stove. I knew it was going to be painful but I still put my hand on it. I have to. So I gather my strength, faith, and all I've got and keep going. The outpouring of love and support always helps. I know there are many people out there praying for me. I draw from your faith as well. Please keep believing.
April 23 - PET Scan
When my doctor noticed that I was really having difficulty dealing with the latest treatments (real bad nausea, fatigue, etc... due to Cisplatin/Navalbene combo), she decided to order a scan to see how I was really doing. My disease has no other markers that can be tracked outside the scan so I have to wait months to see how the treatments are affecting me.
GOOD NEWS!!! There was significant shrinking and activity all around. Compared to last October's scan, there was vast improvement. Last October, they noticed lots of activity in the lymph nodes around the right armpit area. They had said that the disease may have spread there. This time, that seemed to have cleared. I may have been fightling off an infection at the time.
So, I'm still on the same medication. My doctor did adjust how the dosage was given. I used to get Cisplatin all of day 1 which made me sick for about 10 days or so. She split it into 3 days. That way, she can give me more fluids to help with the nausea. This really helped me. Nausea isn't as bad.
I'm continuing to see my accupuncturist (thanks to my friends!!!), chiropractor and my Reiki master. All of whom help me in ways I can't express...
-----
I was really happy to hear the great improvement to my health. But it really bothered me that I had to continue with the same medication because of how difficult it is. It really wipes me out. Some nights, I find myslef whimpering in my mother's arms. I was hoping that I would somehow move on to another gentler medication. Everytime I had to go to treatment, I felt like I was putting my hand on the stove. I knew it was going to be painful but I still put my hand on it. I have to. So I gather my strength, faith, and all I've got and keep going. The outpouring of love and support always helps. I know there are many people out there praying for me. I draw from your faith as well. Please keep believing.
Monday, March 16, 2009
Building a heightened reality
My latest addiction is Hairspray, the movie musical that came out last year. I love it. A lot. I got the special double disc edition where they had all these DVD extras.
When they were explaining how they did the production design. They explained how they had to create a "heightened reality". It wasn't just 60's. It was extremely 60's. This was the world in Tracy Turnblad's mind. In her head, there is singing and dancing all the time. The sets had to reflect that so it would not be a stretch to see the characters just burst out into song.
I really took this to heart. I'm building my heightened reality wherein people fight and WIN against cancer everyday. This is how it should be. For me, this is how it is.
I'm adopting Hairspray as my reality. The fat girl gets the guy (check!). She fights and wins for something she truly believes in (working on this one). I'm working on a soundtrack...
When they were explaining how they did the production design. They explained how they had to create a "heightened reality". It wasn't just 60's. It was extremely 60's. This was the world in Tracy Turnblad's mind. In her head, there is singing and dancing all the time. The sets had to reflect that so it would not be a stretch to see the characters just burst out into song.
I really took this to heart. I'm building my heightened reality wherein people fight and WIN against cancer everyday. This is how it should be. For me, this is how it is.
I'm adopting Hairspray as my reality. The fat girl gets the guy (check!). She fights and wins for something she truly believes in (working on this one). I'm working on a soundtrack...
Monday, March 02, 2009
Big Snow
We had about 6 to 8 inches of snow. That on the left is a picture of a car antenna topper. It's about as big as a ping-pong ball. Just thought it was super hilarious so I had to post it.
It's colder outside than in the freezer... Brrr!!!!
Sunday, March 01, 2009
Cycle 2/24 was good
I got my treatment last Tuesday. No Nausea. Not once did I throw up. I just had to deal with the fatigue which isn't all that bad when I could eat. I really think the accupuncture helped.
Sunday, February 22, 2009
Facebooking
Facebook is my latest addiction. That's actually the reason why I'm blogging more. You know, since I'm online and all... I love connecting with people. I've found friends I haven't heard from in decades! The internet is amazing!
I find that connecting with old friends brings me back to the self I was when I knew them. It's like getting to know myself again from shared memories. Then catching up with each others lives in the present. It's amazing where life takes us.
I was just chatting with Frandee. We were really good friends between the 4th and 7th grades. It was so easy to get back into that friendship. It's like we were never apart.
Then there are those people who you are really curoius about but are too shy to talk to... even through Facebook. Like my crush from waaaay-back. I have no idea what to say to him. So I just spy on him via Facebook. (That makes me feel like I'm back in grade school.)
I got my mom on Facebook. She's loving it. But I really have to think about what I post coz I know my mom will see it. It's not too bad. I don't regret making her my Facebook friend. I'm even trying to convince my mother-in-law. That's gonna be interesting. (Just teasing.) It's really a great way to keep connected.
I find that connecting with old friends brings me back to the self I was when I knew them. It's like getting to know myself again from shared memories. Then catching up with each others lives in the present. It's amazing where life takes us.
I was just chatting with Frandee. We were really good friends between the 4th and 7th grades. It was so easy to get back into that friendship. It's like we were never apart.
Then there are those people who you are really curoius about but are too shy to talk to... even through Facebook. Like my crush from waaaay-back. I have no idea what to say to him. So I just spy on him via Facebook. (That makes me feel like I'm back in grade school.)
I got my mom on Facebook. She's loving it. But I really have to think about what I post coz I know my mom will see it. It's not too bad. I don't regret making her my Facebook friend. I'm even trying to convince my mother-in-law. That's gonna be interesting. (Just teasing.) It's really a great way to keep connected.
Thursday, February 19, 2009
Discombobulated
I was supposed to have treatment today. So I worked hard this week to clear out my tasks at work. Picked up my $300 anti-nausea presciption last night (don't even get me started on that co-pay). I almost didn't drink it because of the cost. But drink it I did. My sarcastic self is telling me to eat my $300 and see if I feel better.
A few days before the treatment, I usually start to get anxious. So I try to keep as busy as possible or else I start to get nauseous. This morning, I felt it already even before getting any medication. But there's medication even for the anxiety. I hate all these pills. But take them I do...
When I got to the doctor's office, they prepped me for treatment. Right before they were about to stick me, they checked my blood work from yesterday. They huddled. Uh-oh. Bad sign. They came back with, "We can't give you chemo today. Your white blood cell count is too low. It's not even boarderline. Not even close." So, we'll wait a few days. I'll get another blood test on Monday and we'll see how my counts are doing.
In my head, I was like, "But I already drank my (really expensive) prescription." Damn!
Well, the good news is that I'll feel good for a few more days. I'll get to ice skate with Burke this weekend. I'll get to see her new tricks on the ice. She can hop and turn (not at the same time).
Then what am I gonna do with the rest of my day? I planned to go to work. But since I was up last night till 2am (I know, I shouldn't do that but I need to fulfill my obligations to my job still), I fell asleep and woke up at 5pm. So, I'll work a couple of hours tonight and go to work tomorrow.
Life goes on... Thankfully.
A few days before the treatment, I usually start to get anxious. So I try to keep as busy as possible or else I start to get nauseous. This morning, I felt it already even before getting any medication. But there's medication even for the anxiety. I hate all these pills. But take them I do...
When I got to the doctor's office, they prepped me for treatment. Right before they were about to stick me, they checked my blood work from yesterday. They huddled. Uh-oh. Bad sign. They came back with, "We can't give you chemo today. Your white blood cell count is too low. It's not even boarderline. Not even close." So, we'll wait a few days. I'll get another blood test on Monday and we'll see how my counts are doing.
In my head, I was like, "But I already drank my (really expensive) prescription." Damn!
Well, the good news is that I'll feel good for a few more days. I'll get to ice skate with Burke this weekend. I'll get to see her new tricks on the ice. She can hop and turn (not at the same time).
Then what am I gonna do with the rest of my day? I planned to go to work. But since I was up last night till 2am (I know, I shouldn't do that but I need to fulfill my obligations to my job still), I fell asleep and woke up at 5pm. So, I'll work a couple of hours tonight and go to work tomorrow.
Life goes on... Thankfully.
Tuesday, February 17, 2009
Truly honored
A really good friend of mine, the awesome Ms. Alexis, is running a 10 mile marathon to raise money for the American Cancer Society. She's running to honor 3 of her co-workers with cancer. I happen to be one of them.
Here is the link to her page (run by ACS) for the marathon. Please consider donating.
Lexi, I am truly honored by your gesture. Thank you.
GO, Lexi!!!
Here is the link to her page (run by ACS) for the marathon. Please consider donating.
Lexi, I am truly honored by your gesture. Thank you.
GO, Lexi!!!
Monday, February 16, 2009
3 years now...
It's been 3 years since my diagnosis. My doctor tells me that I've beaten all the odds. Usually, those diagnosed with Stage 4 NSCLC (non-small cell lung cancer) don't last a year after diagnosis. (She just told me about that statistic.) Dana Reves (Christopher Reves' wife) died in 8 months.
But despite all the hardship, (believe me, it's been hard -- on both me and my family) I'm still hopeful and optimistic. I must be doing something right. There must be a reason for all this pain and suffering.
Am I angry? I honestly feel that anger is a useless emotion. Sometimes, I let myself be angry. Then I let it go. I'm more frustrated. It's frustrating to see no improvement. It's even more frustrating when you see it slowly getting worse.
So I try to just stop. Let go of the past. Release the anger, frustration and anxiety. And try to focus on the future. I fantasize (or I project myself into a better future) my doctor telling me I have a negative PET scan. Whenever I pray for healing, I believe that it will be given. And I trust in the natural order of the universe which is life.
I will survive this. This is the future that I choose.
I will be there in our 10th year anniversary. We'll renew our vows in Bohol.
I will be there to see my daughter grow into that awesome adult I know she will be.
We will be there, happy and healthy, to give away our daughter in her wedding 20 years from now.
I will be there.
But despite all the hardship, (believe me, it's been hard -- on both me and my family) I'm still hopeful and optimistic. I must be doing something right. There must be a reason for all this pain and suffering.
Am I angry? I honestly feel that anger is a useless emotion. Sometimes, I let myself be angry. Then I let it go. I'm more frustrated. It's frustrating to see no improvement. It's even more frustrating when you see it slowly getting worse.
So I try to just stop. Let go of the past. Release the anger, frustration and anxiety. And try to focus on the future. I fantasize (or I project myself into a better future) my doctor telling me I have a negative PET scan. Whenever I pray for healing, I believe that it will be given. And I trust in the natural order of the universe which is life.
I will survive this. This is the future that I choose.
I will be there in our 10th year anniversary. We'll renew our vows in Bohol.
I will be there to see my daughter grow into that awesome adult I know she will be.
We will be there, happy and healthy, to give away our daughter in her wedding 20 years from now.
I will be there.
Sunday, February 15, 2009
The Accupuncturist
I've now had 2 sessions with the accupuncturist. No, the needles did not hurt at all. In fact, after each session, I felt really relaxed.
What's the point? Well, I'm hoping this will help my body be stronger for the next session (which is this coming Thursday 2/19 - I'll appreciate your extra prayers, good thoughts, positive vibes, etc...). Something to help me cope. Like I mentioned in my previous article, it's been quite miserable and long. 9 to 10 days is a long time to be nauseated. I've lost about 25 pounds already. I don't plan to loose any more. Thank goodness it's been steady for the last month or so.
Other than the needles, he's prescribed a special tea. He asked if I'd like to take the pills but I chose the tea. I take too many pills as it is. So he sent me home with a bag of chinese herbs (saw some shrooms in there). It's a little funky but I'm used to it now.
We also talk about accupressure and meditation. There are some points I need to stimulate (by tapping). It's enhanced by mental focus. (Here's the accupuncture/ meditation methodology he prescribed: http://www.emofree.com/)
I like him. I intend to go back and see how it affects my treatments.
If you're in the Reston, VA area and are looking for an accupuncturist. Try khalsamedicine.com. (I'm not paid to advertise.)
What's the point? Well, I'm hoping this will help my body be stronger for the next session (which is this coming Thursday 2/19 - I'll appreciate your extra prayers, good thoughts, positive vibes, etc...). Something to help me cope. Like I mentioned in my previous article, it's been quite miserable and long. 9 to 10 days is a long time to be nauseated. I've lost about 25 pounds already. I don't plan to loose any more. Thank goodness it's been steady for the last month or so.
Other than the needles, he's prescribed a special tea. He asked if I'd like to take the pills but I chose the tea. I take too many pills as it is. So he sent me home with a bag of chinese herbs (saw some shrooms in there). It's a little funky but I'm used to it now.
We also talk about accupressure and meditation. There are some points I need to stimulate (by tapping). It's enhanced by mental focus. (Here's the accupuncture/ meditation methodology he prescribed: http://www.emofree.com/)
I like him. I intend to go back and see how it affects my treatments.
If you're in the Reston, VA area and are looking for an accupuncturist. Try khalsamedicine.com. (I'm not paid to advertise.)
Monday, February 09, 2009
Surgery details
Here's what happened to me last November/December....
November (my surgery)
They were supposed to perform a pleurodesis - fuse the lung wall to the chest wall to prevent liquid from accumulating. When I came to, they told me they did not get to do the pleurodesis. There was diseased cells on the chest wall. Instead, I have a catheter.
It's the latest in catheter technology. I'm not connected to a bag. It's only a hose. I connect it to a vacuum bottle whenever I need to drain my lung.
Am I pissed? Hell, yea! But it is what it is...
December (next step in treatment)
My oncologist was looking around for my next cocktail since the last one (Avastin/Alimta combo) stopped working. At this point, she's told me that I've taken all the best medication for lung cancer out there. I'm running out of options. I thought I'd check out Johns Hopkins and see what they had to offer. (BTW, thanks to Kathy and Justin for hooking me up!)
I looked into their clinical trials. Unfortunately, they do not cover all costs. They usually ask insurance to cover "regular care". My insurance will not cover any procedure connected to anything experimental. So, nix that.
Good thing my oncologist found one more older drug - Navalbene. We're to use it in conjunction with Cisplatin. I've taken Cisplatin before. It's one of my first drugs. My first combo was Cisplatin and Taxotere. That really wiped me out. It also wiped out my hair. I took it the first 3 months and did not work much at the time.
How am I doing on it now? I've been on 2 miserable cycles. It takes me 9 to 10 days to recover. The nausea is terrible. I can't eat so I'm very weak. My doctor says it's only supposed to last 5 days. She's given me more anti-nausea pills for this next cycle. (I've also been going to an accupuncturinst.) Hopefully, we can reduce the nausea and generally bad effects to 5 days.
Despite it all, I'm still optimistic. There has to be a way through this. What won't kill you will only make you stronger. And I intend to win this.
November (my surgery)
They were supposed to perform a pleurodesis - fuse the lung wall to the chest wall to prevent liquid from accumulating. When I came to, they told me they did not get to do the pleurodesis. There was diseased cells on the chest wall. Instead, I have a catheter.
It's the latest in catheter technology. I'm not connected to a bag. It's only a hose. I connect it to a vacuum bottle whenever I need to drain my lung.
Am I pissed? Hell, yea! But it is what it is...
December (next step in treatment)
My oncologist was looking around for my next cocktail since the last one (Avastin/Alimta combo) stopped working. At this point, she's told me that I've taken all the best medication for lung cancer out there. I'm running out of options. I thought I'd check out Johns Hopkins and see what they had to offer. (BTW, thanks to Kathy and Justin for hooking me up!)
I looked into their clinical trials. Unfortunately, they do not cover all costs. They usually ask insurance to cover "regular care". My insurance will not cover any procedure connected to anything experimental. So, nix that.
Good thing my oncologist found one more older drug - Navalbene. We're to use it in conjunction with Cisplatin. I've taken Cisplatin before. It's one of my first drugs. My first combo was Cisplatin and Taxotere. That really wiped me out. It also wiped out my hair. I took it the first 3 months and did not work much at the time.
How am I doing on it now? I've been on 2 miserable cycles. It takes me 9 to 10 days to recover. The nausea is terrible. I can't eat so I'm very weak. My doctor says it's only supposed to last 5 days. She's given me more anti-nausea pills for this next cycle. (I've also been going to an accupuncturinst.) Hopefully, we can reduce the nausea and generally bad effects to 5 days.
Despite it all, I'm still optimistic. There has to be a way through this. What won't kill you will only make you stronger. And I intend to win this.
Monday, November 17, 2008
Excuse my lapse
And again, I have fallen off the blogging wagon.
Since my last entry, here's the latest. I'm making it short and sweet and I will go back and fill in the details later.
Aug 20 - last entry
Aug 28 - next chemo cycle under the new insurance
Sep 10 - CT scan as a baseline to watch if the fluid in the lungs come back (remember I had it extracted in July)
Sep 16 - CT results - I have fluid again (more than before) that needs extraction ASAP
OCT 20 - extract fluid from lung (yes, that's what ASAP means)
OCT 21 - PET scan
OCT 22 - another chemo cycle ends (no results yet from the scan). What my doc told me was reassuring though, "Whatever the result of the scan, you are doing really well and you are feeling good. We will try to keep that going for as long as possible. If the result is good, we will continue as is. If not, we'll do something else. Don't worry too much about it." I really took that to heart.
OCT 29 - another chemo cycle starts. PET scan results are bad. Tumor grew and spread.
OCT 31 - talked to lung doctor who prescribes pleurodesis (seal the space between lung and chest wall to avoid fluid collecting)
Nov 1 - My cousin refers me to a friend of hers who is a lung cancer researcher for Johns Hopkins in Baltimore. Start researching on an interesting clinical trial.
Nov 17 - first visit to Johns Hopkins.
Nov 20 - Pleurodesis
I've skipped a lot of detail and I'll go back to fill it in.
Since my last entry, here's the latest. I'm making it short and sweet and I will go back and fill in the details later.
Aug 20 - last entry
Aug 28 - next chemo cycle under the new insurance
Sep 10 - CT scan as a baseline to watch if the fluid in the lungs come back (remember I had it extracted in July)
Sep 16 - CT results - I have fluid again (more than before) that needs extraction ASAP
OCT 20 - extract fluid from lung (yes, that's what ASAP means)
OCT 21 - PET scan
OCT 22 - another chemo cycle ends (no results yet from the scan). What my doc told me was reassuring though, "Whatever the result of the scan, you are doing really well and you are feeling good. We will try to keep that going for as long as possible. If the result is good, we will continue as is. If not, we'll do something else. Don't worry too much about it." I really took that to heart.
OCT 29 - another chemo cycle starts. PET scan results are bad. Tumor grew and spread.
OCT 31 - talked to lung doctor who prescribes pleurodesis (seal the space between lung and chest wall to avoid fluid collecting)
Nov 1 - My cousin refers me to a friend of hers who is a lung cancer researcher for Johns Hopkins in Baltimore. Start researching on an interesting clinical trial.
Nov 17 - first visit to Johns Hopkins.
Nov 20 - Pleurodesis
I've skipped a lot of detail and I'll go back to fill it in.
Wednesday, August 20, 2008
Insurance - SURE it is!
Our company decided to switch insurance providers this year (first time in 3 years). That took effect on the first of this month. That first week, I had chemo scheduled. While the doctor was hooking me up, I chatted with him and told him about the insurance switch.
Good thing he hadn't hooked me up yet (He was about to. The needle was ready - all he had to do was pierce) or I would have had to pay for it out of pocket since you need pre-authorization for chemo.
We tried to call everyone. HR in our company had not yet submitted our papers since the decision was made close to the switch date. I knew I could not get authorization until at least 2 days after we were in the system. I finally got my insurance card on the 15th. Unfortunately, my doctor was gone this week and I had a conference to attend out of town.
I faxed my doctor's office my new card so they can get the authorization done. Best case scenario, I'll get treatment next week.
I was off treatment for 3 whole weeks. I'm happy and grateful for the break but I'm starting to get nervous. I notice every single ache and pain. I'm doing all my energy healing just to calm me down but I want to be back in treatment. (Never thought I'd say that.) But I know that it's keeping me alive and in good shape.
The title is whiney about insurance, I know I would never afford the treatments on my own. (Who can?) It's just really darned inconvenient when all medical procedures have to stop and wait for paperwork. I work for a software company. Information is supposed to pass faster than 3 weeks (OK, 2 weeks - the third week was separate conferences that were scheduled in advanced for me and my doc). Good thing it's not a matter of life and death. Oh, wait a minute...
Good thing he hadn't hooked me up yet (He was about to. The needle was ready - all he had to do was pierce) or I would have had to pay for it out of pocket since you need pre-authorization for chemo.
We tried to call everyone. HR in our company had not yet submitted our papers since the decision was made close to the switch date. I knew I could not get authorization until at least 2 days after we were in the system. I finally got my insurance card on the 15th. Unfortunately, my doctor was gone this week and I had a conference to attend out of town.
I faxed my doctor's office my new card so they can get the authorization done. Best case scenario, I'll get treatment next week.
I was off treatment for 3 whole weeks. I'm happy and grateful for the break but I'm starting to get nervous. I notice every single ache and pain. I'm doing all my energy healing just to calm me down but I want to be back in treatment. (Never thought I'd say that.) But I know that it's keeping me alive and in good shape.
The title is whiney about insurance, I know I would never afford the treatments on my own. (Who can?) It's just really darned inconvenient when all medical procedures have to stop and wait for paperwork. I work for a software company. Information is supposed to pass faster than 3 weeks (OK, 2 weeks - the third week was separate conferences that were scheduled in advanced for me and my doc). Good thing it's not a matter of life and death. Oh, wait a minute...
Tuesday, August 12, 2008
Moving in
I thought we had it planned so well. We got the house one whole month before we had to get out of our apartment. We were slowly bringing stuff over every night and weekend. By the time we actually had to move out, we still had a LOT of stuff. Where did this stuff come from? When Kel and I moved here in 2001, we just had 2 suitcases each. Now, we had to hire movers???
The first couple of days, I couldn't even find my shoes. I was going to work in my slippers. At least, Kel had his sandals. He dressed them up with socks hoping no one would notice. Well, it is summer. And for the next couple of weeks, it was a mad hunt for the little things. We couldn't find the rice cooker - take note: it had cooked rice in it. It took two days of opening boxes and life-size Tetris to find it. It wasn't edible when we did, but at least it didn't stink - yet - too much. I couldn't find our pool passess either. (Found them the Monday after the pools closed for the summer. Bummer!)
Little by little, we got things organized. I lost about 10 pounds just hauling stuff up and down those stairs. Don't worry, I gained them back. (sigh).
For a litte while, we didn't have TV. The cable guy came and hooked us up only to find that he only hooked up the basement. Kel had to figure out how the wiring went up to the living room. Now, we're truly hooked up.
I miss the days that we didn't have TV. I thought Burke would drive us bonkers but she found ways to entertain herself. We played board games or her toys (we love Magnetix - it's something we all play). I actually got things done around the house (Well, I don't think I could have lasted so long going to work in my slippers). More on this in a later article...
My proudest achievement was painting Burke's room. (Now I know why they call it painting - it's such a PAIN!) Early on, I asked her what color she wanted. "Rainbow!!!" was the enthusiastic answer. After thinking about it for some time, I knew I didn't want to sign up to do a mural in her room. I negotiated with rainbow polka-dots. It was truly worth the effort. (That is staying up there until she can paint over it herself.)
We're still settling in. The basement is still a mess. (That's one of the reasons why I can't host my house-warming yet since that's the only way to the backyard.) The couch isn't here yet. We have yet to figure out our daily routines and just how to live in our house. We've got time.
The first couple of days, I couldn't even find my shoes. I was going to work in my slippers. At least, Kel had his sandals. He dressed them up with socks hoping no one would notice. Well, it is summer. And for the next couple of weeks, it was a mad hunt for the little things. We couldn't find the rice cooker - take note: it had cooked rice in it. It took two days of opening boxes and life-size Tetris to find it. It wasn't edible when we did, but at least it didn't stink - yet - too much. I couldn't find our pool passess either. (Found them the Monday after the pools closed for the summer. Bummer!)
Little by little, we got things organized. I lost about 10 pounds just hauling stuff up and down those stairs. Don't worry, I gained them back. (sigh).
For a litte while, we didn't have TV. The cable guy came and hooked us up only to find that he only hooked up the basement. Kel had to figure out how the wiring went up to the living room. Now, we're truly hooked up.
I miss the days that we didn't have TV. I thought Burke would drive us bonkers but she found ways to entertain herself. We played board games or her toys (we love Magnetix - it's something we all play). I actually got things done around the house (Well, I don't think I could have lasted so long going to work in my slippers). More on this in a later article...
My proudest achievement was painting Burke's room. (Now I know why they call it painting - it's such a PAIN!) Early on, I asked her what color she wanted. "Rainbow!!!" was the enthusiastic answer. After thinking about it for some time, I knew I didn't want to sign up to do a mural in her room. I negotiated with rainbow polka-dots. It was truly worth the effort. (That is staying up there until she can paint over it herself.)
We're still settling in. The basement is still a mess. (That's one of the reasons why I can't host my house-warming yet since that's the only way to the backyard.) The couch isn't here yet. We have yet to figure out our daily routines and just how to live in our house. We've got time.
Tuesday, July 01, 2008
Our house
It's officially our house now. We just came back from the settlement where we signed our lives away (at least the next 30 years). It was smooth and we did it during lunch.
Can't thank everyone enough!!!
Everyone for the love and support
Freddie and Diday (plus the Aromins) for helping out with the paperwork.
Most especially MOM!!! We could not have done this without you.
Can't thank everyone enough!!!
Everyone for the love and support
Freddie and Diday (plus the Aromins) for helping out with the paperwork.
Most especially MOM!!! We could not have done this without you.
Friday, June 27, 2008
Another Cycle - 06/25/2008
This cycle wasn't too bad. On the day itself, I was still able to eat. Even dinner. Usually, by that time my tastebuds had gone and left me but this time, they stayed a little longer.
The next day, they'd left. I was barely able to drink my medication in the morning. The water already bothered me. So I forced my self to drink as much as I could since I didn't know when I'd be able to drink next.
Lunch time, I tried to eat Shaking Beef (one of my favorite dishes from our local Vietnamese restaurant). No can do. I had one bite, and it just didn't settle well.
I did get to go to the office. I worked all day. So, I was a little fatigued but not too much. I was thirsty but just could not drink. The worst part was having to barf in my trashcan at my desk. The first episode, I was on the phone. Good thing that was a quick one. The second episode later in the afternoon was bad. Couple it with the fact that I could not drink water. Cough drops had to do.
It's late now. I had just had some watered down milk and Milo. My stomach seems to be taking it well.
Can I just say something about the Milo here? It's not instant. You have to mix it in a hot liquid. I tried just putting it in cold milk and it came out lumpy. I had to nuke it a bit. That's shocking to me since in Manila, Milo is instant. Meaning it dissolves in cold liquid. What's up with that, Nestle?
Enough ranting. I'm still thankful for the Milo. It's the first liquid in my system that my body didn't reject. I'm so dehydrated, it's not funny anymore. If only I could take water intravenously without having to go to the doctor.
Didn't have headaches this time. Whoopie!
The next day, they'd left. I was barely able to drink my medication in the morning. The water already bothered me. So I forced my self to drink as much as I could since I didn't know when I'd be able to drink next.
Lunch time, I tried to eat Shaking Beef (one of my favorite dishes from our local Vietnamese restaurant). No can do. I had one bite, and it just didn't settle well.
I did get to go to the office. I worked all day. So, I was a little fatigued but not too much. I was thirsty but just could not drink. The worst part was having to barf in my trashcan at my desk. The first episode, I was on the phone. Good thing that was a quick one. The second episode later in the afternoon was bad. Couple it with the fact that I could not drink water. Cough drops had to do.
It's late now. I had just had some watered down milk and Milo. My stomach seems to be taking it well.
Can I just say something about the Milo here? It's not instant. You have to mix it in a hot liquid. I tried just putting it in cold milk and it came out lumpy. I had to nuke it a bit. That's shocking to me since in Manila, Milo is instant. Meaning it dissolves in cold liquid. What's up with that, Nestle?
Enough ranting. I'm still thankful for the Milo. It's the first liquid in my system that my body didn't reject. I'm so dehydrated, it's not funny anymore. If only I could take water intravenously without having to go to the doctor.
Didn't have headaches this time. Whoopie!
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