Oddly enough, things went according to plan. What a strange occurance!
Monday was my appointment with the liver doctor. I will spare you the details of my agonizing 1 1/2 hour wait but I did see him and he had good news...imagine that! He took a look at some blood work from a few weeks back and noticed the liver counts essentially went back to normal...I pointed out that was because I was not on chemo for the 2 weeks prior. He was amused but also pointed out that that was a good sign that the liver counts were strickly a product of the chemo. DUH! I could have told you that doc! Well I suppose it's always good to err on the side of caution and rule out any of the scary stuff. All of my tests and ultrasound did just that. Woo-hoo! I then brought up my oncologists questions (1) how high could the counts go without being dangerous and causing serious permanent damage, (2) what is the "uh-oh" number that we just have to stop. He rambling off for a few minutes and then said he would call my oncologist directly and discuss my case. Phew! I've been asking those two to communicate and NOT rely on me to relay this very important information. I would somehow screw it up...I know I would.
Next up was Tuesday, my appointment with my oncologist and then my appointment with my chemo nurse. I asked my doctor if the liver doc had called and he said yes. The two had cleared up that they ARE on the same page and we will proceed ahead. I asked about when my next scan will be since we both suspect the tumors are growing based on my increasing pain. I didn't get the answer I was looking for but he did say that perhaps we should change back to my original chemo cocktail that we knew was working. It turns out that none of my liver counts changed despite the change in dose and the complete change of one of the drugs. So we will go back to the Methotrexate/Vinblastine combo and drop the Vinoralbine like a hot potato! Once we have a few treatments under our belt, we will then slowly increase back to the original doses.
Unfortunately, they didn't have the Vinblastine in the office so I offered to skip this week (aren't I just the team player :-) but sadly they declined. Treatment went ahead as scheduled with the old drug for the last time. This is the drug that makes me sick instantly. I am in a constant fight the minute I am hooked up. It's so weird! The entire rest of the day is a challenge and then I wake up the next day feeling tired but the nausea has gone away. The third day is back to the nausea! Ugh!
This time I lost the fight! I got sick on the way home in the car. Nothing is worse! I hate that feeling. I do have to admit that for a short period of time, I did feel a little bit better once I finally threw up but the feeling quickly returned and it turned into one of the worst days since starting chemo. The whole experience ought to turn me into quite a wreck come next Tuesday. Can't wait!
As for those buggers...my white counts...they were in the 30's which is terribly high and the doctor joked saying I have Leukemia. Uh-not funny doc! These oncologists sure have a strange sense of humor! We are still on 5 shots a week. They were no doubt so high because I had my last shot like 14 hours before I had my blood drawn. With 5 shots, it leaves little wiggle room since there has to be 24 hours between the last shot and chemo and 24 hours between chemo and my first shot. Count that sucker up and you have a full week! I could volunteer to get chemo every 2 weeks but they probably wouldn't ever go for that. I may just give it a try though :-)
I know I sound like a broken record but I am truly, truly strengthened and lifted by all of the support and love shown to my family. Not a day goes by without you asking me how I'm doing, how you can help or you are bringing my family the most incredibly gracious meals. With that help I can go to a baseball game, do a load of laundry and help the kids with their homework without ever having to worry about having the energy (and strong enough stomach) to prepare food for the kids to eat. Thank you just doesn't seem to be enough.
Thank you
Thursday, April 29, 2010
Thursday, April 22, 2010
Back on the Crazy Train!
Well we've jumped back aboard! My white counts are back in the normal column (low but remember I am not a "high flyer" to begin with) and that can only mean one thing! Torture!! So no appointment with the doctor, just the chemo. I was also wrong about my liver appointment...it is actually Monday the 26th (ooops!)
As usual I was feeling terrible on the way home. The nausea is becoming unbearable and that is with the double dose of anti-nausea meds. Begs the question....why??? So! What's a girl to do?!?!?! Thankfully Karen has changed the meals to Tuesday/Wednesday (have I mentioned that I love this wonderful lady???) so I can come home and go to bed. Honestly, Tuesdays are much of a blur. I come home and go straight to bed. I spend the rest of the day praying for Wednesday to come and the nausea storm to be over! It's a long day for everyone! The kids are getting better at it. They know on Tuesdays they are pretty much on auto pilot. Poor kiddies...not at all what I had envisioned for our lives...
I am on the regular routine of five shots of Neupogen a week to boost those darn blood cells. Only weekly blood tests will reveal if they are doing the trick. It is difficult for me to imagine that they aren't working. I've gotten pretty used to the bone pain. It sneaks up and grabs me sometimes but for the most part I hardly even notice anymore. And the shots...not such a big deal either, just a pain....an expensive pain! The lasts round of 20 was $10,000. Sheesh! We are all in the wrong business!
So the week ahead brings blood work and liver doc on Monday, chemo on Tuesday if all goes according to plans. I'll keep you posted!
As usual I was feeling terrible on the way home. The nausea is becoming unbearable and that is with the double dose of anti-nausea meds. Begs the question....why??? So! What's a girl to do?!?!?! Thankfully Karen has changed the meals to Tuesday/Wednesday (have I mentioned that I love this wonderful lady???) so I can come home and go to bed. Honestly, Tuesdays are much of a blur. I come home and go straight to bed. I spend the rest of the day praying for Wednesday to come and the nausea storm to be over! It's a long day for everyone! The kids are getting better at it. They know on Tuesdays they are pretty much on auto pilot. Poor kiddies...not at all what I had envisioned for our lives...
I am on the regular routine of five shots of Neupogen a week to boost those darn blood cells. Only weekly blood tests will reveal if they are doing the trick. It is difficult for me to imagine that they aren't working. I've gotten pretty used to the bone pain. It sneaks up and grabs me sometimes but for the most part I hardly even notice anymore. And the shots...not such a big deal either, just a pain....an expensive pain! The lasts round of 20 was $10,000. Sheesh! We are all in the wrong business!
So the week ahead brings blood work and liver doc on Monday, chemo on Tuesday if all goes according to plans. I'll keep you posted!
Saturday, April 17, 2010
No Go!...Again!!
My weekly visit was Tuesday this week. The "replacement" nurse (btw-I'm not trusting her at ALL!) calls me back and tells me to sit down (this is her routine-and I don't like it!). When I walked into the infusion room I saw my regular nurse, Maria. She looked at me and smiled. I know what this means. I said, "No?" She just smiled. I asked if my liver counts were up and she said yes but the problem is my white counts. They are in the 1's. That is not very good at all!
I did have an appointment scheduled with the doctor following my infusion, so we just went back out in the waiting room and waited and waited and waited! Someone please tell me why the office couldn't call me and tell me my counts were bad. So as it played out I went back into the waiting room and waited for an hour plus. Scott couldn't go with me so I asked my brother to take me. I know he didn't mind but when you ask someone to take a few hours out of their day you'd like it to be useful. I could have driven myself to see the doctor. I just need "taxi service" when they poison me :-)
My visit with the doctor didn't really produce much more info. I told him that I am due to see the liver specialist next week and that I had a plethera of blood tests and an abdominal ultrasound. I shared the info about the liver biopsy that the specialist mentioned and he seemed about as thrilled about the idea as I did. I took that to mean that I am right in my reservations. One interesting fact was revealed, however. I mentioned that the specialist was inquiring about past blood tests and how the liver tests looked 12 months, 6 months, 2 months....ago. So my oncologist looked over the blood test immediately prior to starting chemo and one of the liver tests came out abnormal. Interesting... This means prior to any chemo drugs being introduced to my system, my liver already was not functioning properly. Looking back upon it now, however, I realize it could be the celebration that we had the week-end before I started chemo :-)
The high end of the "normal" column was 40 and my number was 45. It isn't too elevated and obviously not cause for concern. I do recall being at a baseball tournament and being quite nervous about starting chemo and a few friends may have purchased an adult beverage for me. I am a light weight and 1 or 2 drinks may have been enough to elevate the counts. Keep in mind those numbers now are hovering around 300. So it is a drastic change. A significant concern. So I see the specialist on Thursday to see what inspiring news he can share with me...can't wait!
As for my onocologist....he instructed me to get three shots of the Neupogen this week to try and get my blood cell counts elevated. From now on my shots will be increased from three to five shots a week. Nothing like feeling like a pin cushion! Geno continues to be my nurse and my girls love being able to help. I think if I would let them, they would love to give me a shot. On occasion I self inject. It's not that big of a deal. I knew I would arrive at that mind set, it just took some time. I am there and between Geno and I, five times a week shouldn't be bad. It's just the pain from the swollen bones that is troublesome. I can't take Tylenol because of the liver counts and I can't take Advil or Motrin because of the chemo drugs. Leaves me to suffer but with all that I've been through...what's a little pain, right?
One last troubling set of surrounds....because I can't go a week without some excitement! My oncologist was looking over my chart, making his notes and looked up to ask if I was still taking my vitamin B12. Shocked by the question I answered no because he had NEVER mentioned this to me. Seems that I should have been taking this all along since the beginning. Then he wrote down the formula to pick up at Trader Joe's which includes B12, Folic Acid and B6. This formula is called Homocysteine. Once I researched this formula it says something about heart attacks and strokes if the levels are too high, especially if you suffer from high cholesterol. BINGO! I also very specifically remember him instructing me to NEVER take Folic Acid. I checked with Scott to double check my recollection and he was surprised to hear that the B12 was something I was supposed to be taking. He never heard the doctor say anything about it either and he has been at every appointment with me. So I have a call into the doctor since Wednesday to get my answer or reassurance that it's okay but as you might have guessed, he never called back! Nothing goes in my body unless I specifically get the okay and I haven't gotten that. So nothing has gone in my body! Just the poison :-)
So the week ahead should be interesting. I go for my blood draw on Monday, chemo Tuesday, liver specialist Thursday and hopefully a restful week-end. I am beyond frustrated. I realize their are no concrete answers with these types of tumors but the pain is back (which probably means they are growing again), the liver counts continually elevated are a great cause for concern and can cause permanent damage and everyone seems to be shaking up their bag of tricks and taking whatever surfaces at the top. I would like it if they weren't all standing around scratching their heads wondering what in the heck to do with me!
I did have an appointment scheduled with the doctor following my infusion, so we just went back out in the waiting room and waited and waited and waited! Someone please tell me why the office couldn't call me and tell me my counts were bad. So as it played out I went back into the waiting room and waited for an hour plus. Scott couldn't go with me so I asked my brother to take me. I know he didn't mind but when you ask someone to take a few hours out of their day you'd like it to be useful. I could have driven myself to see the doctor. I just need "taxi service" when they poison me :-)
My visit with the doctor didn't really produce much more info. I told him that I am due to see the liver specialist next week and that I had a plethera of blood tests and an abdominal ultrasound. I shared the info about the liver biopsy that the specialist mentioned and he seemed about as thrilled about the idea as I did. I took that to mean that I am right in my reservations. One interesting fact was revealed, however. I mentioned that the specialist was inquiring about past blood tests and how the liver tests looked 12 months, 6 months, 2 months....ago. So my oncologist looked over the blood test immediately prior to starting chemo and one of the liver tests came out abnormal. Interesting... This means prior to any chemo drugs being introduced to my system, my liver already was not functioning properly. Looking back upon it now, however, I realize it could be the celebration that we had the week-end before I started chemo :-)
The high end of the "normal" column was 40 and my number was 45. It isn't too elevated and obviously not cause for concern. I do recall being at a baseball tournament and being quite nervous about starting chemo and a few friends may have purchased an adult beverage for me. I am a light weight and 1 or 2 drinks may have been enough to elevate the counts. Keep in mind those numbers now are hovering around 300. So it is a drastic change. A significant concern. So I see the specialist on Thursday to see what inspiring news he can share with me...can't wait!
As for my onocologist....he instructed me to get three shots of the Neupogen this week to try and get my blood cell counts elevated. From now on my shots will be increased from three to five shots a week. Nothing like feeling like a pin cushion! Geno continues to be my nurse and my girls love being able to help. I think if I would let them, they would love to give me a shot. On occasion I self inject. It's not that big of a deal. I knew I would arrive at that mind set, it just took some time. I am there and between Geno and I, five times a week shouldn't be bad. It's just the pain from the swollen bones that is troublesome. I can't take Tylenol because of the liver counts and I can't take Advil or Motrin because of the chemo drugs. Leaves me to suffer but with all that I've been through...what's a little pain, right?
One last troubling set of surrounds....because I can't go a week without some excitement! My oncologist was looking over my chart, making his notes and looked up to ask if I was still taking my vitamin B12. Shocked by the question I answered no because he had NEVER mentioned this to me. Seems that I should have been taking this all along since the beginning. Then he wrote down the formula to pick up at Trader Joe's which includes B12, Folic Acid and B6. This formula is called Homocysteine. Once I researched this formula it says something about heart attacks and strokes if the levels are too high, especially if you suffer from high cholesterol. BINGO! I also very specifically remember him instructing me to NEVER take Folic Acid. I checked with Scott to double check my recollection and he was surprised to hear that the B12 was something I was supposed to be taking. He never heard the doctor say anything about it either and he has been at every appointment with me. So I have a call into the doctor since Wednesday to get my answer or reassurance that it's okay but as you might have guessed, he never called back! Nothing goes in my body unless I specifically get the okay and I haven't gotten that. So nothing has gone in my body! Just the poison :-)
So the week ahead should be interesting. I go for my blood draw on Monday, chemo Tuesday, liver specialist Thursday and hopefully a restful week-end. I am beyond frustrated. I realize their are no concrete answers with these types of tumors but the pain is back (which probably means they are growing again), the liver counts continually elevated are a great cause for concern and can cause permanent damage and everyone seems to be shaking up their bag of tricks and taking whatever surfaces at the top. I would like it if they weren't all standing around scratching their heads wondering what in the heck to do with me!
Tuesday, April 6, 2010
Counts Are Up Again
Treatment went ahead as scheduled yesterday despite my elavated liver counts. My white counts were really high because there was only one day between my last shot and my blood draw. I was also a day early to get my treatment (not a full week between treatments).
I got sick..today seems a pinch better. I think this is the pattern that I will follow with this new medication. I don't think I will be staying on this new medication (tumor pain continues to increase) but it is the first pattern that I seem to have followed. Hey! I look for normalcy where ever I can get it! :-)
I've mentioned to the chemo nurse the constant itching that I am experiencing. I have welts starting from my raditation/surgical scar area and it wraps all the way around my hip to my belly. I scratch so much that I break the skin and that is not good. The doctor gave me a steroid cream to help but it really hasn't helped much...
Spring Break for the kids is in full swing!
I got sick..today seems a pinch better. I think this is the pattern that I will follow with this new medication. I don't think I will be staying on this new medication (tumor pain continues to increase) but it is the first pattern that I seem to have followed. Hey! I look for normalcy where ever I can get it! :-)
I've mentioned to the chemo nurse the constant itching that I am experiencing. I have welts starting from my raditation/surgical scar area and it wraps all the way around my hip to my belly. I scratch so much that I break the skin and that is not good. The doctor gave me a steroid cream to help but it really hasn't helped much...
Spring Break for the kids is in full swing!
Sunday, April 4, 2010
Happy Easter
Sorry I've been out for a week or so...what can I say? Chemo!
I had a treatment on Tuesday. It wasn't my usual Maria and the "replacement" put in the wrong IV. It all worked itself out but I could use as little excitement as possible. My platelets are low so my blood clotting factor isn't where it should be. My blood tests on Monday and IV placement on Tuesday was full of blood....I will leave it at that!
So! Treatment went okay on Tuesday. I got sick on the way home and went to bed when I got home. Wednesday I was just tired. It feels very much like you are getting over having the flu. You aren't 100% but you feel better. Do you know what I mean?? Fatigue and little energy but I was not in bed wishing I was no longer here :-)
I woke up Thursday early morning (2 am 'ish) and was completely freaked out by the overwhelming nausea. That lasted until Saturday morning. I'm not sure what happened. My hair has started falling out rapidly again. I am beginning to wonder if the "replacement" nurse gave me the full strength Methotrexate instead of the reduced dose. My blood work should be interesting....telling....
I did my blood work for the week yesterday because I have chemo tomorrow. My taxi (AKA my hubby) has work in court on Tuesday. So I get to start my week off in style! Yea me! On the up side, my liver counts did return to normal in 2 out of 3 categories from the 2 week break. That is a good sign that the elavated counts are a direct result of the chemo and not anything else. I fully expected this anyway but it's nice to see something actually play out the way I hope and expect :-)
The tumor pain is increasing and that is NOT good. I believe it is an indication that the change in meds is not good for the tumor problem. It doesn't seem to have been great for the liver problems either... I see my oncologist next week and he said we would discuss changing back to Vinblastine at that time.
We have received so many great meals and I've tried to mention them all so that you all know how much we appreciate you but I know I have fallen short. I've forgotten some and I apologize. I will stop trying :-) because I don't want to offend anyone by an inadvertant ommission. Know that we love your meals and we love you! Thank you all so very, very much!
Happy Easter!
Enjoy your families, love one another and appreciate what you have in life!
I had a treatment on Tuesday. It wasn't my usual Maria and the "replacement" put in the wrong IV. It all worked itself out but I could use as little excitement as possible. My platelets are low so my blood clotting factor isn't where it should be. My blood tests on Monday and IV placement on Tuesday was full of blood....I will leave it at that!
So! Treatment went okay on Tuesday. I got sick on the way home and went to bed when I got home. Wednesday I was just tired. It feels very much like you are getting over having the flu. You aren't 100% but you feel better. Do you know what I mean?? Fatigue and little energy but I was not in bed wishing I was no longer here :-)
I woke up Thursday early morning (2 am 'ish) and was completely freaked out by the overwhelming nausea. That lasted until Saturday morning. I'm not sure what happened. My hair has started falling out rapidly again. I am beginning to wonder if the "replacement" nurse gave me the full strength Methotrexate instead of the reduced dose. My blood work should be interesting....telling....
I did my blood work for the week yesterday because I have chemo tomorrow. My taxi (AKA my hubby) has work in court on Tuesday. So I get to start my week off in style! Yea me! On the up side, my liver counts did return to normal in 2 out of 3 categories from the 2 week break. That is a good sign that the elavated counts are a direct result of the chemo and not anything else. I fully expected this anyway but it's nice to see something actually play out the way I hope and expect :-)
The tumor pain is increasing and that is NOT good. I believe it is an indication that the change in meds is not good for the tumor problem. It doesn't seem to have been great for the liver problems either... I see my oncologist next week and he said we would discuss changing back to Vinblastine at that time.
We have received so many great meals and I've tried to mention them all so that you all know how much we appreciate you but I know I have fallen short. I've forgotten some and I apologize. I will stop trying :-) because I don't want to offend anyone by an inadvertant ommission. Know that we love your meals and we love you! Thank you all so very, very much!
Happy Easter!
Enjoy your families, love one another and appreciate what you have in life!
Subscribe to:
Comments (Atom)
