That is how long it takes they say to loose your hair from your first infusion. I was fixated on that date as soon as we started, knowing I would start to loose it on or around The 26th. I got my hair cut short SHORT this past Monday so that when I lost my hair it would be more of a gradual transition for Thomas (long hair to short hair to no hair). My mom held Thomas on her lap next to me while the hairdresser cut it so that he could see what was going on. He was very intrigued towards the end when it got really short, but after it was done I was still Mommy and he was still happy with that. Then to be honest I kinda forgot all about losing my hair. So I was surprised last night when while playing on the floor with Thomas he leaned over a pulled a handful of hair out. Oh right.....here we are at 14 days. A little part of me was bummed.....that same little part that kinda hoped after surgery they would say "whoops total mistake, we took another look at the tumor and it's NOT cancer!" so that little part was thinking....well maybe I won't lose my hair? But alas here we are, hair is starting to fall out every time I touch it.
I had infusion number two today. It went a little differently. They lowered my steroid dose since I was sleeping like a meth addict, so they figured they would give me some relief there. And about 30 seconds in to getting the "A" drug I got nauseous....really really I might puke all over you nauseous. Julie, our nurse, stopped administering it and gave me more anti nausea drugs into my IV. My mom brought me saltines. The moment passed. Onwards with A, this time less nausea. They also slowed down the drip on the "C" thinking that is what caused my massive headache last time. Certainly helped, only small headache this time. And even with the changes we were out of there in 3 hours. Then off to see Ella right away for her to fix me up. I did not feel as great as last time leaving Ella. The nausea and haze is pretty strong. But I didn't take anything when I got home...it was starting to pass. Drank Ginger tea, felt better. Had an Epsom salt bath....little bit better. Now snuggled up in bed, ready to take my Ativan and say good night to the world for eight hours.
If you are wondering why I am not talking about the port surgery that was scheduled for this morning it's because I canceled it. I really didn't want it and kept beating myself up that I should get it....and then realized why am I beating myself up, just cancel it. Spoke with Julie over the phone about it on Monday and she said she understood and would cancel but I still needed to keep in mind that if I need it later on, I would have to get it. Also it is safer to have a port when getting the "A" since that is nasty stuff if it got out of your vein. Yes yes I understood it all, just cancel it. If I need it later we can cross that road when we come to it.
Overall today was a little worse than the first time. Probably because I know how shitty I am going to feel in 24 hours. It's like knowing the biggest bully is going to kick your ass at school tomorrow. Sigh. I thought it would be the opposite, because now I know I only feel like garbage for a couple days and then I will start to feel better. But it's awfully hard to rationalize all that when you already feel like garbage.
So off I go to hibernate for the weekend. My parents and Bob are doting on me so I know I will be well taken care of. Could not do this without them. Xoxo
Friday, May 27, 2011
Sunday, May 22, 2011
A new woman!
The past few days I have felt *gasp* good! It all started Tuesday...I woke up and the haze was almost totally lifted. LIFE! I was still tired during the day and took multiple naps, but at least I could think straight again. Wednesday unfortunately was a slide back because I didn't get my sleep cocktail just right and ended up not falling back asleep past 2am. Zombie day. But still no haze. Thursday was Thomas's birthday (yay!) and so I made sure to get my sleep cocktail right and knocked myself OUT on wednesday night. I woke up feeling pretty good. I had an appointment with Ella (the acupuncturist) at 11am and she was pleased I was feeling good. I told her that I was still having issues with my eyes (migraine like symptoms - can't focus on the TV or computer at all, makes me nauseous; and can get about 15 minutes into reading a book or magazine before the same results happen). She said unfortunately this was fairly common but she would work on it as well as keeping me from being nauseous. I laid on my stomach, she put the pins in......and I could have almost fell asleep. I think I laid there for almost 45 minutes. It was great. She came back in, took the pins out and we set up more appointments for upcoming weeks.
**Funny side story about Ella......so while we are making the appointments she is looking at her calendar and hemming and hawing over the week of June 26th. She says, "I think we may have to talk a little closer to the week to book something...I participate in Sundance and that is when I have it penciled in". So I'm thinking, wow Sundance Film Festival, I did NOT see this coming. She goes on to say "You know, you can't plan Sundance...it just happens when it happens" total confusion on my face, doesn't the film festival happen the same time every year? "You know, the Native American Sundance" ah yes, of course....I should have known**
After I left acupuncture I was feeling pretty damn good.....like back to normal good. No more naps (still times where I need to rest from being tired), lots of long walks, and eating like normal. I have completely drunk the kool aid on acupuncture...it is AMAZING. Even my eyes feel better. I can get through an entire magazine and look at the computer for a few minutes before they start to freak out.
Thomas's birthday was lots of fun, just a few of us gathered to eat carrot cupcakes and pizza (his all time favorite food). I am so glad I felt good for his birthday....I was dreading that his first birthday I would be a trainwreck and not able to partcipate at all. And, you only get one First birthday.....
On Friday I woke up and still felt good (!) so my mom and I drove to the beach for some fresh air. We stayed the night (just Thomas, Gigi and I) soaked up the Oregon coast sun (and wind) and drank up the damp air. Long walks in and around town, snuggles on the beach with Thomas and good sleep in a dark room with the sound of the ocean in the distance. Unfortunately the bone pain from the GCSF shot has started (dull throbing ache in my lower back), but nothing that advil doesn't make me almost forget. I am trying not to take too much stuff (even advil) if I can avoid it. I am sure I could be a drug dumpster right now and my doctor wouldn't care, but my liver and kidneys have enough to filter out with chemo and sleeping pills (multiple) every night. Plus it's a good excuse to turn the heated seats in the car on.
I feel revived and happy again. I was so scared after last weekend....I felt so awful (imagine migraine, flu, hangover and horrid jet lag combined into one nasty cocktail) and was so scared that the feeling would only get worse OR would just continue like that for 4 months. 2 of my oncologists had told me that I would get a slight "dip" the day after chemo, but for the first 3 or 4 days after chemo I shouldn't feel too bad since I would be pumped with so many anti nausea drugs and steriods to counteract the chemo and the real pain comes 7 days after chemo. So when 24+ hours after chemo I felt like I could die, I just thought ohmygodohmygod this is a slight dip? I don't think I can handle it if it gets worse. But it is looking like those 2 days 24 hrs after chemo is when I am going to feel my worse, and it's all uphill after that. Phew.....this I think I can handle.
**Funny side story about Ella......so while we are making the appointments she is looking at her calendar and hemming and hawing over the week of June 26th. She says, "I think we may have to talk a little closer to the week to book something...I participate in Sundance and that is when I have it penciled in". So I'm thinking, wow Sundance Film Festival, I did NOT see this coming. She goes on to say "You know, you can't plan Sundance...it just happens when it happens" total confusion on my face, doesn't the film festival happen the same time every year? "You know, the Native American Sundance" ah yes, of course....I should have known**
After I left acupuncture I was feeling pretty damn good.....like back to normal good. No more naps (still times where I need to rest from being tired), lots of long walks, and eating like normal. I have completely drunk the kool aid on acupuncture...it is AMAZING. Even my eyes feel better. I can get through an entire magazine and look at the computer for a few minutes before they start to freak out.
Thomas's birthday was lots of fun, just a few of us gathered to eat carrot cupcakes and pizza (his all time favorite food). I am so glad I felt good for his birthday....I was dreading that his first birthday I would be a trainwreck and not able to partcipate at all. And, you only get one First birthday.....
On Friday I woke up and still felt good (!) so my mom and I drove to the beach for some fresh air. We stayed the night (just Thomas, Gigi and I) soaked up the Oregon coast sun (and wind) and drank up the damp air. Long walks in and around town, snuggles on the beach with Thomas and good sleep in a dark room with the sound of the ocean in the distance. Unfortunately the bone pain from the GCSF shot has started (dull throbing ache in my lower back), but nothing that advil doesn't make me almost forget. I am trying not to take too much stuff (even advil) if I can avoid it. I am sure I could be a drug dumpster right now and my doctor wouldn't care, but my liver and kidneys have enough to filter out with chemo and sleeping pills (multiple) every night. Plus it's a good excuse to turn the heated seats in the car on.
I feel revived and happy again. I was so scared after last weekend....I felt so awful (imagine migraine, flu, hangover and horrid jet lag combined into one nasty cocktail) and was so scared that the feeling would only get worse OR would just continue like that for 4 months. 2 of my oncologists had told me that I would get a slight "dip" the day after chemo, but for the first 3 or 4 days after chemo I shouldn't feel too bad since I would be pumped with so many anti nausea drugs and steriods to counteract the chemo and the real pain comes 7 days after chemo. So when 24+ hours after chemo I felt like I could die, I just thought ohmygodohmygod this is a slight dip? I don't think I can handle it if it gets worse. But it is looking like those 2 days 24 hrs after chemo is when I am going to feel my worse, and it's all uphill after that. Phew.....this I think I can handle.
Monday, May 16, 2011
Day four after chemo...
The whole idea that I felt so good after acupuncture that I didn't need to take anything to sleep backfired....big time. I got about 2 hours of sleep and went into day 2 a total zombie mess. I gave in and took the anti nausea meds, which then put me in a medicine haze for the rest of the day. That day was so far the low point. I felt better the next, and better still today (and am taking something every night to sleep).
I came to the realization on sunday morning that I need full time help for taking care of Thomas. I was delusional I suppose to think that maybe I could take care of him part of the day, with help half the day. 48 hrs after chemo I had barely held him and was not contributing at all to his care. The nausea comes in waves....the fatigue hits like a wall, and the haze is ever present. Lucky for us my sister Elizabeth is out of school in the afternoons so is coming over almost everyday to take care of Thomas in the afternoons. So far we are patch working the mornings with help from all over (xoxo to you Pip for this morning!) and just need to get to June doing this until E is out of school and can come full time.
I am hopeful that Saturday was my worst day and that everyday gets slightly better. The only thing that hasn't gotten better is the fatigue, and unfortunately I know that it will get progressively worse. But I am learning how to lean into it instead of struggle against it - short litle cat naps and just taking a moment to rest until I can get back up again.
I came to the realization on sunday morning that I need full time help for taking care of Thomas. I was delusional I suppose to think that maybe I could take care of him part of the day, with help half the day. 48 hrs after chemo I had barely held him and was not contributing at all to his care. The nausea comes in waves....the fatigue hits like a wall, and the haze is ever present. Lucky for us my sister Elizabeth is out of school in the afternoons so is coming over almost everyday to take care of Thomas in the afternoons. So far we are patch working the mornings with help from all over (xoxo to you Pip for this morning!) and just need to get to June doing this until E is out of school and can come full time.
I am hopeful that Saturday was my worst day and that everyday gets slightly better. The only thing that hasn't gotten better is the fatigue, and unfortunately I know that it will get progressively worse. But I am learning how to lean into it instead of struggle against it - short litle cat naps and just taking a moment to rest until I can get back up again.
Friday, May 13, 2011
Day one after chemo
So this morning was no picnic, groggy, out of it, light nausea, woozy. I was able to eat just fine, and it seemed like the more the day went one (and the drugs from last night wore off) I was feeling marginally better. I also went back to the Dr's office to get a booster shot (GCFS I think it's called, don't have my handy notebook by me) which stimulates the bone marrow to make more white blood cells, which boost your immune system and make you heal quicker from the chemo. Side effects may be bone pain, but not everyone gets that. None so far for me, knock on wood. I then had an appointment with an acupuncturist named Ella who was LOVELY. Appointment was at 4, I was home by 6, ate dinner with the family, Bob and I put Thomas to bed...and I realized I was actually feeling pretty ok. Had a long Epsom salt soak in the tub (per Ella - she said it was a good detox, must do it for the first three days after chemo). And now am snuggled up in bed with high hopes I can sleep without taking anything. Looking forward to sweet dreams....
Chemo Day
so sorry, admin blog site was down yesterday so I couldn't blog about chemo day! It ended up to be very uneventful, which is good, and went much faster than we anticipated. Showed up at 1:15pm, got weighed, took blood pressure and inserted IV. They drew blood to get my blood count (white cells being the most important), results take 5 minutes. They will do this every time to make sure I am healthy enough to get chemo. Dr. Kurup came in and quizzed me on what we were doing today :) Keeping me on my toes! I, as usual, had a page of questions that I had come up with over the week and she patiently answered all of them.
The nurse who was assigned to me for the day, Lena, was a lovely woman - swedish transplant, and was very kind and gentle with us all. Oh, forgot to mention that Bob and my Mom came with me :) When Lena was inserting my IV she looked at my arm for a long long time. I asked her about ports and she said she would prefer for me to get a port for next time. It would make things easier for them, and easier for me. We talked about the procedure (just local anesthetic - I had thought I would be knocked out) and set one up for the morning of my next chemo day. They can be accessed almost right away, so no wait.
We were ushered into the infusion room after the blood counts were back and got to pick where we wanted to sit. It was about half full so we had our pick of chairs. First Lena set up my bag of anti-nausea and steroid drip, which takes 30 minutes to drain. Then she set up a saline bag which is how the "A" part of chemo is administered. She has to sit with us the whole time and hand administer the A since that is the nasty one where if it gets out of your vein at all could cause burning and nerve damage, so they closely monitor it. It only took about 10 minutes. Then we moved on to the bag of "C" which took about 45 minutes. All in all it seemed very quick. When the "C" was done and my IV pole started beeping another nurse (not Lena) came over and said, ok you are done! And we all said "are you sure? can you check with Lena? that was quick...." And yes we were done. It was 4pm. The only major drawback for me is that you are sitting under fluorescent lights with your back to the window, so by the end I had a major headache...fluorescent lights do that to me. So for my next time I can either turn my chair around and look out the window (hello, why don't more people do this?) or get a private room.
We checked out, made our appointment for the port surgery (7:30 am on 5/27) and for chemo (noon on 5/27) so it looks like I'll be at the hospital all day! They had called in my meds to Fred Meyer by my parents house, so we drove picked those up and headed home. Home by 5pm. I was feeling ok, maybe a little woozy.....slight jet lag feeling. Lena had suggested I take Zofran (one of the anti nausea drugs) right away so that we are ahead of the nausea. She was concerned because I mentioned that I did get nauseous with pregnancy and it's not terribly uncommon for me to get nauseous. So with that recommendation, I took the Zofran and we headed out with Thomas on a stroll around the neighborhood. It was a gorgeous night - 61 degrees, sunny, big beautiful puffy clouds. My headache was starting to go away, but the Zofran was kicking in ....feeling groggy, more intense jet lag. We had dinner early - 6pm - then Bob put Thomas to bed while I watched and I got in bed. They had said that the intravenous steroids they gave me might keep me up at night the first day, so they gave me Adavan - sleep pill/anti-anxiety/anti-nausea pill. I took that at 8 because I was still awake and dozed off.
Unfortunately the first night was not a cake walk....which they warned me. I woke up every 2 hours....little nauseous (ate some saltines, drank some water), then around 1am started to get wicked stomach cramps. I stumbled out of the room and found the heating pad in the next room (Bob was upset since he wanted me to wake him out for those things since he said it looked like I was walking like I needed my appendix out). Heating pad wasn't really working. 3am asked Bob to get me advil. Ahhhh, relief. Slept for a couple hours. Hit up Bob for advil again 6am. Slept some more. Thomas was a total gem and decided to sleep until NINE A.M! So did Mom :)
I snuggled with Thomas this morning, then brought him upstairs where Gigi (aka my mom, Judy) fed him breakfast while I tried to eat something. Not much of an appetite, but not nauseous (knock on wood), just groggy......
I feel like maybe I am groggy from the meds (Zofran and Adavan) and from little sleep. I am hoping that it what it is. Today the goal is to go get my tried and true anti-nausea things I used when I was pregnant (no side effects!): ginger tea & honey ginger tonic. I am also going to try and take a stroll around the neighborhood and get some naps in. We will see how that goes!
One day done....lots more to go :)
The nurse who was assigned to me for the day, Lena, was a lovely woman - swedish transplant, and was very kind and gentle with us all. Oh, forgot to mention that Bob and my Mom came with me :) When Lena was inserting my IV she looked at my arm for a long long time. I asked her about ports and she said she would prefer for me to get a port for next time. It would make things easier for them, and easier for me. We talked about the procedure (just local anesthetic - I had thought I would be knocked out) and set one up for the morning of my next chemo day. They can be accessed almost right away, so no wait.
We were ushered into the infusion room after the blood counts were back and got to pick where we wanted to sit. It was about half full so we had our pick of chairs. First Lena set up my bag of anti-nausea and steroid drip, which takes 30 minutes to drain. Then she set up a saline bag which is how the "A" part of chemo is administered. She has to sit with us the whole time and hand administer the A since that is the nasty one where if it gets out of your vein at all could cause burning and nerve damage, so they closely monitor it. It only took about 10 minutes. Then we moved on to the bag of "C" which took about 45 minutes. All in all it seemed very quick. When the "C" was done and my IV pole started beeping another nurse (not Lena) came over and said, ok you are done! And we all said "are you sure? can you check with Lena? that was quick...." And yes we were done. It was 4pm. The only major drawback for me is that you are sitting under fluorescent lights with your back to the window, so by the end I had a major headache...fluorescent lights do that to me. So for my next time I can either turn my chair around and look out the window (hello, why don't more people do this?) or get a private room.
We checked out, made our appointment for the port surgery (7:30 am on 5/27) and for chemo (noon on 5/27) so it looks like I'll be at the hospital all day! They had called in my meds to Fred Meyer by my parents house, so we drove picked those up and headed home. Home by 5pm. I was feeling ok, maybe a little woozy.....slight jet lag feeling. Lena had suggested I take Zofran (one of the anti nausea drugs) right away so that we are ahead of the nausea. She was concerned because I mentioned that I did get nauseous with pregnancy and it's not terribly uncommon for me to get nauseous. So with that recommendation, I took the Zofran and we headed out with Thomas on a stroll around the neighborhood. It was a gorgeous night - 61 degrees, sunny, big beautiful puffy clouds. My headache was starting to go away, but the Zofran was kicking in ....feeling groggy, more intense jet lag. We had dinner early - 6pm - then Bob put Thomas to bed while I watched and I got in bed. They had said that the intravenous steroids they gave me might keep me up at night the first day, so they gave me Adavan - sleep pill/anti-anxiety/anti-nausea pill. I took that at 8 because I was still awake and dozed off.
Unfortunately the first night was not a cake walk....which they warned me. I woke up every 2 hours....little nauseous (ate some saltines, drank some water), then around 1am started to get wicked stomach cramps. I stumbled out of the room and found the heating pad in the next room (Bob was upset since he wanted me to wake him out for those things since he said it looked like I was walking like I needed my appendix out). Heating pad wasn't really working. 3am asked Bob to get me advil. Ahhhh, relief. Slept for a couple hours. Hit up Bob for advil again 6am. Slept some more. Thomas was a total gem and decided to sleep until NINE A.M! So did Mom :)
I snuggled with Thomas this morning, then brought him upstairs where Gigi (aka my mom, Judy) fed him breakfast while I tried to eat something. Not much of an appetite, but not nauseous (knock on wood), just groggy......
I feel like maybe I am groggy from the meds (Zofran and Adavan) and from little sleep. I am hoping that it what it is. Today the goal is to go get my tried and true anti-nausea things I used when I was pregnant (no side effects!): ginger tea & honey ginger tonic. I am also going to try and take a stroll around the neighborhood and get some naps in. We will see how that goes!
One day done....lots more to go :)
Saturday, May 7, 2011
And the winner is...
Dr. Kurup! While both doctors were amazing, and I would have been in excellent hands with either, I went with Dr. Kurup because not only did I have a better connection with her (she had the unfair advantage of being a woman as well), but she was just as concerned with how I felt right now as she was with making sure we got rid of the cancer. While both doctors had very different styles, they really had the same format and hit on the same topics....with the BIG exception that Dr. Chui did not examine me during our visit, and that is one of the first things that Dr. Kurup did. This was big for me. To me it represented that she was looking at my current state and taking that into account. I also brought up with both doctors that I was still uncomfortable from my surgery (slight pain in the incision area). Dr. Chui did not completely brush that aside, but did not seem as concerned about it and basically said - it might just be like that for a while. Dr. Kurup gave suggestions on how I could be more comfortable.
Not only am I going with Dr. Kurup, but I am also going with her recommendation of dose dense chemo. This is the SHORTER regimen - this only takes 4 months. I will get chemo every 2 weeks. The reason this is shorter and you can get it every 2 weeks is that your body can recover faster when they seperate out the components of the chemo to AC first, then T later. With the other regimen, I would be getting all 3 components at once - TAC - and this takes a full 3 weeks for you to recover until your next does.
For dose dense chemo the first four "cycles" consist of just A and C (out of the regimen of AC and T), and the next 4 cycles consist of just the T. From what I understand, the AC is the harder one to take (it causes the most nausea) so you are getting the hard stuff out of the way first. Of course the T is no picnic, and you are dealing with a build up of fatigue that continually gets worse through the regimen.
I am also not going to get estrogen deprivation therapy. While I am not sure if we will have more children, I certainly don't want to make that decision right now. I also do not want to put everyone (including me) through the hell of being dumped into menopause overnight.
My first day of chemo will be next Thursday, May 12th. I am hoping that this schedule gives me a good weekend! Of course everyone reacts to chemo differently, but most people have a big drop the first day of chemo (feeling crummy) then it gets a little better....then about 3-4 days later is when the bad stuff happens (you feel the worst) for a few days, then you start to feel better again gradually until you go in for your next does. I am hoping this gives me weekends that are decent so that I can visit with friends and family (and take out of town visitors!), and deal with the crummy days during the week.
When I say I had a better connection with Dr. Kurup it was because I felt like she was talking to me as a patient...and as a mom, and a sister and a daughter....as a friend. She was concerned with giving me chemo that was more brutal not because I couldn't handle it (she kept saying if she would give it to anyone, it would be me since I was strong, young and healthy) but because why would she put me through that pain if she wasn't 100% sure that I needed something that strong and that the outcomes statistically were the same.
I am not meaning to bash Dr. Chui at all when I say that I thought Dr. Kurup seemed more concerned about my current state (emotional, physical) as well as my future state. I thought Dr. Chui was a brilliant brilliant man with a very noble goal - he wanted to make sure I never had to deal with this again. And by making sure I never dealt with this again, he would throw everything I could take at me. And he thought I could take it all. Maybe if I was more advanced in my state (if it had spread to the lymph nodes) or if I was more concerned that it had gotten out, maybe then I would be jumping in the deep end first with Dr. Chui. And of course, if we ever get to that state in the future, I can still jump in the deep end. But for right now, I am not convinced I need to throw everything at me all at once. Maybe that is too Pollyanna of me to not be as concerned as I should be. Both Dr's made it VERY clear that cancer could have gotten out and could be anywhere in my body right now and we just really don't know and we should not assume ANYTHING based on the fact that it was not in my lymph nodes. The both commented that the size of my tumor was concerning to them and should not be taken lightly (not that anyone takes cancer lightly!). So for now, I go with my gut and with the knowledge that it is not only chemo that cures me...it is my loving family and friends, my support network, cuddles with Thomas and taking care of my body as a whole with good food and the avoidance of complicated chemicals.
So keep up your positive thoughts and prayers...I still need them :)
xoxo
Not only am I going with Dr. Kurup, but I am also going with her recommendation of dose dense chemo. This is the SHORTER regimen - this only takes 4 months. I will get chemo every 2 weeks. The reason this is shorter and you can get it every 2 weeks is that your body can recover faster when they seperate out the components of the chemo to AC first, then T later. With the other regimen, I would be getting all 3 components at once - TAC - and this takes a full 3 weeks for you to recover until your next does.
For dose dense chemo the first four "cycles" consist of just A and C (out of the regimen of AC and T), and the next 4 cycles consist of just the T. From what I understand, the AC is the harder one to take (it causes the most nausea) so you are getting the hard stuff out of the way first. Of course the T is no picnic, and you are dealing with a build up of fatigue that continually gets worse through the regimen.
I am also not going to get estrogen deprivation therapy. While I am not sure if we will have more children, I certainly don't want to make that decision right now. I also do not want to put everyone (including me) through the hell of being dumped into menopause overnight.
My first day of chemo will be next Thursday, May 12th. I am hoping that this schedule gives me a good weekend! Of course everyone reacts to chemo differently, but most people have a big drop the first day of chemo (feeling crummy) then it gets a little better....then about 3-4 days later is when the bad stuff happens (you feel the worst) for a few days, then you start to feel better again gradually until you go in for your next does. I am hoping this gives me weekends that are decent so that I can visit with friends and family (and take out of town visitors!), and deal with the crummy days during the week.
When I say I had a better connection with Dr. Kurup it was because I felt like she was talking to me as a patient...and as a mom, and a sister and a daughter....as a friend. She was concerned with giving me chemo that was more brutal not because I couldn't handle it (she kept saying if she would give it to anyone, it would be me since I was strong, young and healthy) but because why would she put me through that pain if she wasn't 100% sure that I needed something that strong and that the outcomes statistically were the same.
I am not meaning to bash Dr. Chui at all when I say that I thought Dr. Kurup seemed more concerned about my current state (emotional, physical) as well as my future state. I thought Dr. Chui was a brilliant brilliant man with a very noble goal - he wanted to make sure I never had to deal with this again. And by making sure I never dealt with this again, he would throw everything I could take at me. And he thought I could take it all. Maybe if I was more advanced in my state (if it had spread to the lymph nodes) or if I was more concerned that it had gotten out, maybe then I would be jumping in the deep end first with Dr. Chui. And of course, if we ever get to that state in the future, I can still jump in the deep end. But for right now, I am not convinced I need to throw everything at me all at once. Maybe that is too Pollyanna of me to not be as concerned as I should be. Both Dr's made it VERY clear that cancer could have gotten out and could be anywhere in my body right now and we just really don't know and we should not assume ANYTHING based on the fact that it was not in my lymph nodes. The both commented that the size of my tumor was concerning to them and should not be taken lightly (not that anyone takes cancer lightly!). So for now, I go with my gut and with the knowledge that it is not only chemo that cures me...it is my loving family and friends, my support network, cuddles with Thomas and taking care of my body as a whole with good food and the avoidance of complicated chemicals.
So keep up your positive thoughts and prayers...I still need them :)
xoxo
Tuesday, May 3, 2011
The Decision
Wow.....what a tough decision in front of me. I met with two amazing oncologists over the past 2 days, both at the top of their game and highly respected in the industry. After my appointment yesterday with Dr. Chui I almost canceled my appointment today thinking what could this other oncologist possibly have to offer that Dr. Chui couldn't. We were SO impressed with Dr Chui. He was brilliant, specialized in breast cancer in young women and his philosophy was simple: he cures breast cancer. His expectation is that it will never come back again, in any form...no cancer for the rest of your life. Of course that also means he is throwing everything and the kitchen sink at you. If he thinks you can handle it, he will give it to you - short term pain for long term gain. He quoted a lot of clinical trials, but also had separate opinions that were not based on trials and were based on his gut. His recommended regimen is TAC chemo (all components of TAC at once) every 3 weeks for 6 cycles. This bucks the trend from what other oncologists in the region recommend (more on that later). He wanted to of course follow up with radiation - that is standard and not negotiable - and after radiation it would be 5 years of Tamoxifen, the gold standard for pre-menopausal women. But the BIG difference was that he also recommends estrogen deprivation therapy which means he wants to shut down my ovaries from producing estrogen. It would be after radiation, and we would start with a shot once a month and continue that (if I could tolerate it) with the eventual goal of removal of the ovaries. This is a radical approach, and not one that many women take. He quoted a clinical trial that followed 1,804 premenopausal women who had high risk breast cancer. They did NOT have chemo, but just had surgery followed by estrogen deprivation & tamoxifen. After 5yrs, 95% of them were free of recurrence. He thought these numbers were impressive enough to recommend this therapy (of course WITH chemo). His opinion (not based on clinical trials) is that Tamoxifen just slows the growth of cancer....it does not necessarily stop feeding the cancer. If you deprive your body of estrogen production from your ovaries you are then also depriving the cancer of its "fertilizer". Estrogen deprivation is a drastic hormonal change for your body and is BRUTAL. Of course, he is not forcing any of his patients down this route....just suggesting it. I had briefly talked with Dr Liu (Kaiser doctor) about this and he did not recommend this course of action for me. He thought it would negatively impact my quality of life and did not think it was worth it..he thought Tamoxifen was enough. Dr Chui was also adamant that I get a port (which I was not going to get) because of the specific drug associated with TAC chemo. Getting a port would require one more surgery (out patient just like lumpectomy), but there is not a wait after surgery...you can get chemo within 24 hrs of the surgery. The port makes it so that you can get chemo without getting an IV. Dr Chui (as mentioned previously) works at OHSU which is one of the best (if not THE best) hospital in all of Oregon. His building is brand new with an infusion room (where you get the chemo) that is straight out of the movies (if the movies had chemo rooms), totally high tech, view over looking the river.....very impressive and fancy pants.
Today we met with Dr Kurup. She is a young Indian doctor at Providence (she reminded me of you Vidya!). I loved her right away and had a great rapport with her. Providence is another highly respected cancer hospital in Portland. The grounds are not even close to as impressive as OHSU, but they are definitely nice and up to date. Dr Kurup had a completely different regimen recommendation from Dr Chui. She recommended "dose dense" TAC chemo, which means you get AC part of the chemo every 2 weeks for 4 cycles, followed up with the T part of the chemo every 2 weeks for 4 cycles. This would be followed up with radiation and Tamoxifen. Dose dense chemo is a shorter process and slightly better tolerated based on the fact that you are not getting all 3 drugs at the same time. The reason that this is the recommended norm for doctors in this region is that it is better tolerated and the results seem to be the same from the other way of administering TAC (which Dr Chui recommended). This is where it gets confusing right - why would Dr Chui recommend something that was not as well tolerated and longer if the results were the same? The TAC regimen that Dr Chui recommends has a different ingredient "T" than the dose dense TAC that Dr Kurup recommends. The T in Dr Chui's chemo has a MUCH lower risk of peripheral neuropathy (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001619/). Dr Chui made a pretty big deal about this, enough so that I was convinced I would never get dose dense chemo because there is double the chance that I could get peripheral neuropathy. Peripheral neuropathy symptoms range and could be as mild as a slight tingling in your fingertips or feet, to mid level: you are basically wearing oven mits on your hands and can't even button your own shirt, to extreme: wheel chair. When we talked with Dr Kurup about this (double the risk of peripheral neuropathy) she explained that yes, about double the amount of people getting the "T" in the dose dense get peripheral neuropathy...but what those numbers don't explain is that less than 1/3 of those people do not have long term symptoms...the symptoms go away. It is also something that you can monitor while you are getting the "T" portion to make sure it doesn't get to the extreme (or even moderate) level. Dr Kurup also disagreed with Dr Chui on the estrogen deprivation. Yes, she knew of the study that made it seem like this was going to be the next best thing in the world for breast cancer treatment. But she also mentioned that there had been other studies that showed that it was almost a wash in the end, and she wasn't going to recommend something that drastic unless she was sure of end results. And regarding the port, she had a chemo nurse come in and look at my veins to see if I had "good veins". The nurse took one look and thought that I didn't need a port (at least not for dose dense chemo).
I could literally write novels with all of the information that we received in the 2 visits over the last 48 hours. Each doctor spent about 1.5 - 2 hours with us, and neither one repeated themselves. That is tons of information, so I am just hitting the high points here.
We have been bouncing off the pros and cons of each doctor and regimen with each other all evening (Bob, my Mom and Dad and I) and I think I have made a decision but am going to sleep on it. I have a lot to think about and want to just move on with life and get this started as soon as possible. As soon as I make a choice I will get started with chemo next week. I know that I would be in excellent hands with either doctor. It's a great problem to have - two amazing doctors to choose from. I'll post tomorrow who I am going with.....stay tuned!
Today we met with Dr Kurup. She is a young Indian doctor at Providence (she reminded me of you Vidya!). I loved her right away and had a great rapport with her. Providence is another highly respected cancer hospital in Portland. The grounds are not even close to as impressive as OHSU, but they are definitely nice and up to date. Dr Kurup had a completely different regimen recommendation from Dr Chui. She recommended "dose dense" TAC chemo, which means you get AC part of the chemo every 2 weeks for 4 cycles, followed up with the T part of the chemo every 2 weeks for 4 cycles. This would be followed up with radiation and Tamoxifen. Dose dense chemo is a shorter process and slightly better tolerated based on the fact that you are not getting all 3 drugs at the same time. The reason that this is the recommended norm for doctors in this region is that it is better tolerated and the results seem to be the same from the other way of administering TAC (which Dr Chui recommended). This is where it gets confusing right - why would Dr Chui recommend something that was not as well tolerated and longer if the results were the same? The TAC regimen that Dr Chui recommends has a different ingredient "T" than the dose dense TAC that Dr Kurup recommends. The T in Dr Chui's chemo has a MUCH lower risk of peripheral neuropathy (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001619/). Dr Chui made a pretty big deal about this, enough so that I was convinced I would never get dose dense chemo because there is double the chance that I could get peripheral neuropathy. Peripheral neuropathy symptoms range and could be as mild as a slight tingling in your fingertips or feet, to mid level: you are basically wearing oven mits on your hands and can't even button your own shirt, to extreme: wheel chair. When we talked with Dr Kurup about this (double the risk of peripheral neuropathy) she explained that yes, about double the amount of people getting the "T" in the dose dense get peripheral neuropathy...but what those numbers don't explain is that less than 1/3 of those people do not have long term symptoms...the symptoms go away. It is also something that you can monitor while you are getting the "T" portion to make sure it doesn't get to the extreme (or even moderate) level. Dr Kurup also disagreed with Dr Chui on the estrogen deprivation. Yes, she knew of the study that made it seem like this was going to be the next best thing in the world for breast cancer treatment. But she also mentioned that there had been other studies that showed that it was almost a wash in the end, and she wasn't going to recommend something that drastic unless she was sure of end results. And regarding the port, she had a chemo nurse come in and look at my veins to see if I had "good veins". The nurse took one look and thought that I didn't need a port (at least not for dose dense chemo).
I could literally write novels with all of the information that we received in the 2 visits over the last 48 hours. Each doctor spent about 1.5 - 2 hours with us, and neither one repeated themselves. That is tons of information, so I am just hitting the high points here.
We have been bouncing off the pros and cons of each doctor and regimen with each other all evening (Bob, my Mom and Dad and I) and I think I have made a decision but am going to sleep on it. I have a lot to think about and want to just move on with life and get this started as soon as possible. As soon as I make a choice I will get started with chemo next week. I know that I would be in excellent hands with either doctor. It's a great problem to have - two amazing doctors to choose from. I'll post tomorrow who I am going with.....stay tuned!
Monday, May 2, 2011
The Drive
Well, we made it. It was a long drive (just over 10 hours) but Thomas was a total champ. He made it almost 9 hours before he started to get antsy. I don't blame him...we were all getting antsy. He settled in right away to Grandma and Grandpa's house and we all slept like logs last night....
Today was the appointment with the oncologist at OHSU, the big research and teaching hospital here. It is a state of the art facility with campuses all over town. The building I visited today was right on the water with gorgeous views of the city. We had a great appointment with Dr Chui and were very impressed with everything he had to say. He specializes in breast cancer in young women. The average age of his patients is 40 (while the average age of breast cancer in general is 67). I'll go into more of the details tomorrow, after I meet the other oncologist with Providence. I have a lot to chew on tonight and want to compare it with what the oncologist with Providence says tomorrow. Sorry for the tease...more to come tomorrow :)
Today was the appointment with the oncologist at OHSU, the big research and teaching hospital here. It is a state of the art facility with campuses all over town. The building I visited today was right on the water with gorgeous views of the city. We had a great appointment with Dr Chui and were very impressed with everything he had to say. He specializes in breast cancer in young women. The average age of his patients is 40 (while the average age of breast cancer in general is 67). I'll go into more of the details tomorrow, after I meet the other oncologist with Providence. I have a lot to chew on tonight and want to compare it with what the oncologist with Providence says tomorrow. Sorry for the tease...more to come tomorrow :)
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