Scott and I went down to Cedars Sinai to visit Dr. Forscher...the sarcoma expert. He has a lot of experience with Desmoids. After driving around the enormous campus...we finally found Parking Lot 6...sheesh! It wasn't easy!!
The nurse that we first met up with made sure everyone in the sarcoma wing knew that I was a new patient. Everyone greeted me with a lovely smile and hello. It was such a refreshing change!! The next nurse that came into to take my history was soooooo, sooooo nice! She actually brought me to tears because in all the many months, doctor visits, specialists, scans, labs....I had never come across a person who just looked me in the eye and said, "I will do ANYTHING to help you"...and mean it! She went into a lot of scenarios that would make me getting chemo at Cedars possible. I don't know that these "things" are right for me personally but the idea that someone understood what it means to have a desmoid...the struggles...the fear....the pain...the unknown was such a relief for me. She was incredibly empathetic and caring. She offered to always be a phone call away and ask the doctor to actually write out the orders (specific orders) to deliver to my doctor. AND now that I have a chart, with records and a face and a memory of who I actually am....I am now considered a patient. I could call and get answers. Like I said, it was just such a different experience for me. I felt like finally I was somewhere where they understand desmoids and they actually wanted to help me. Wow!!
Dr. Forscher was equally as nice. He took a history and gave a mini lesson in desmoids. The causes...nothing concrete but genetic, hormonal or a result of trauma. Nothing new...I don't have a family history...the last Wheeler was born in 2005 and far enough away from this ordeal to be determined it's probably not hormonal and trauma. What can I say? I fell down the stairs (hardwood) within a year the beginning bump. Who knows!? The short explaination is it doesn't really matter. I have them and they aren't going away easily!
He confirmed that surgery, while for some can irradicate the beast, for others it can fuel the beast. Yup! That's me! Radiation is the same story. It made my tumors grow..not shrink! Double shucks! He did, however mention that the amount of radiation I received was a "fair" amount. He is not the first doctor to be surprised by the amount of "day glow" I received. Lucky me :-) So he feels chemo is the next likely step. As is the cocktail that I am on.
Interestingly, he mentioned that the liver counts don't excite them much because they expect it especially with the Methotrexate. So! My doc was on to something when he ignored them initially. He did say that they do pay very close attention to white counts. Mine have always been a problem. My oncologist likes to refer to me as "not a high flyer." I let him know that I will now be trying vinorelbine instead of the vinblastine. He didn't seem to disagree.
My overall impression is that we are on the right track. He said he wouldn't be doing anything else at this stage. My tumors are stable and my pain has subsided. These are all cause for celebration. He recommended scans every 3-4 months and I could return to him for his opinion or have them sent his way for review. He was also going to write a report and shoot it off to my doctor.
Overall it was a good visit. I have to admit I left feeling a bit let down. I had unreasonable expectations. I thought he was going to wave his magic wand, tell me all that was wrong and offer the big fix. He did not and he said that I should be aware if anyone claims to be able to do that. He has years and years of experience and is continually being challenged by these terrible creatures. So no magic wand, no pretty bow on my story...back to reality!
Friday, March 5, 2010
Thursday, March 4, 2010
It's Official...I'm a Wimp! :-)
As the chemo nurse stuck her head out to call her next victim...uh I mean patient...she wanted it to be known that I am very sensative and I would need to first see the doctor before seeing her.
My counts were much of the same despite the 30% reduction in Methotrexate and 50% reduction in the Velban (vinblastine). Man! And there are small children who are tolerating this better than I am.
My friend Karen had done a lot of research on the many different drugs used to treat desmoids and so I asked Dr. Polonsky his opinion. Apparently, Vinorelbine is in the same family but tends to be less toxic on the liver. Before bringing this up we were going to go ahead with the decreased doses used the week before but after talking about vinorelbine, he decided we would give it a try.
Maria, the chemo nurse didn't have enough of the vinorelbine so I got what they had. It is delivered a bit differently than the vinblastine. The vinblastine was pushed through my IV but the vinorelbine is given in the IV via a drip. So now I get the first IV bag that has the sodium chloride and vinorelbine followed by a bag of sodium chloride. She explained this drug can burn the veins so it is important to let them know if I every feel any pain. It can cause some real problems.
I am always very curious so I asked her if the Methotrexate was also in the bag because she didn't "push" it through the IV. She said that I wasn't getting Methotrexate anymore. This didn't sound right to me so I kept questioning her. She asked the doctor and yes I was supposed to get that one, too. It pays to be your own advocate. If I hadn't pushed it, I never would have gotten it and who knows how long it would have taken to catch. Unfortunately, my questioning started AFTER she took the IV out. I had to get another one to deliver the Metho via a push. Who knows how it will be delivered next time. Something to look forward to....NOT!
They gave me all the warnings with this new drug. They aren't sure what it will do to my already low white counts so I need to pay particular attention to infection...fever. He also doubled the dose of my anti-nausea...that doesn't sound good...does it?! I will have to wait until next week to find out what a full dose is like....so far so good on the "left overs" :-)
Tomorrow I travel to Cedar Sinai to see the Sarcoma expert. Dr. Forscher is the doctor that I have been fighting my insurance to go see but they always say I can get the same treatment from a doctor in my network. While I don't disagree with that statement...it is the experience that I am after. Someone with experience with and knowledge of desmoids could direct treatment that I could receive in network. I will go in as a cash patient and fork over the nearly $1000 to get his expert attention. Wish me well!!
Delicious dishes this week from the Ramirez, Milton, Woo-Sam, Gibo and Hanano families!! Thank you all so very much! It is a treat, especially on the days when I have treatments. They are generally a fog and it is very helpful to be able to just go to bed and crash. You pick up the slack for me and normalcy remains for my family. Thank you...Thank you...Thank you!!
My counts were much of the same despite the 30% reduction in Methotrexate and 50% reduction in the Velban (vinblastine). Man! And there are small children who are tolerating this better than I am.
My friend Karen had done a lot of research on the many different drugs used to treat desmoids and so I asked Dr. Polonsky his opinion. Apparently, Vinorelbine is in the same family but tends to be less toxic on the liver. Before bringing this up we were going to go ahead with the decreased doses used the week before but after talking about vinorelbine, he decided we would give it a try.
Maria, the chemo nurse didn't have enough of the vinorelbine so I got what they had. It is delivered a bit differently than the vinblastine. The vinblastine was pushed through my IV but the vinorelbine is given in the IV via a drip. So now I get the first IV bag that has the sodium chloride and vinorelbine followed by a bag of sodium chloride. She explained this drug can burn the veins so it is important to let them know if I every feel any pain. It can cause some real problems.
I am always very curious so I asked her if the Methotrexate was also in the bag because she didn't "push" it through the IV. She said that I wasn't getting Methotrexate anymore. This didn't sound right to me so I kept questioning her. She asked the doctor and yes I was supposed to get that one, too. It pays to be your own advocate. If I hadn't pushed it, I never would have gotten it and who knows how long it would have taken to catch. Unfortunately, my questioning started AFTER she took the IV out. I had to get another one to deliver the Metho via a push. Who knows how it will be delivered next time. Something to look forward to....NOT!
They gave me all the warnings with this new drug. They aren't sure what it will do to my already low white counts so I need to pay particular attention to infection...fever. He also doubled the dose of my anti-nausea...that doesn't sound good...does it?! I will have to wait until next week to find out what a full dose is like....so far so good on the "left overs" :-)
Tomorrow I travel to Cedar Sinai to see the Sarcoma expert. Dr. Forscher is the doctor that I have been fighting my insurance to go see but they always say I can get the same treatment from a doctor in my network. While I don't disagree with that statement...it is the experience that I am after. Someone with experience with and knowledge of desmoids could direct treatment that I could receive in network. I will go in as a cash patient and fork over the nearly $1000 to get his expert attention. Wish me well!!
Delicious dishes this week from the Ramirez, Milton, Woo-Sam, Gibo and Hanano families!! Thank you all so very much! It is a treat, especially on the days when I have treatments. They are generally a fog and it is very helpful to be able to just go to bed and crash. You pick up the slack for me and normalcy remains for my family. Thank you...Thank you...Thank you!!
Thursday, February 25, 2010
Here we go!
I saw the doctor today and well, my numbers still aren't great! White counts are low despite the Neupogen and liver counts are increased...still!
We move ahead with a plan to decrease the vinblastine by 50%. This should do the trick! I am again pose the question if this is will mess with the power of these drugs actually working. He gives me a less sure answer than last time. He says it all depends on how I choose to look at it. I change from day to day.
He also said that if my counts don't improve...i'm a big wimp! Just kidding he didn't really say that but he is worried with my counts and what to do if we don't see improvement. I feel okay. I've been better but I have certainly been worse! That's for sure!!
Fabulous meals this week (I can't say how much this helps us!!) provided by....the Lopez, Herrera, La Rue, and Mejia families. Everyday is like Christmas for the kids. I can't thank you enough :-)
We move ahead with a plan to decrease the vinblastine by 50%. This should do the trick! I am again pose the question if this is will mess with the power of these drugs actually working. He gives me a less sure answer than last time. He says it all depends on how I choose to look at it. I change from day to day.
He also said that if my counts don't improve...i'm a big wimp! Just kidding he didn't really say that but he is worried with my counts and what to do if we don't see improvement. I feel okay. I've been better but I have certainly been worse! That's for sure!!
Fabulous meals this week (I can't say how much this helps us!!) provided by....the Lopez, Herrera, La Rue, and Mejia families. Everyday is like Christmas for the kids. I can't thank you enough :-)
Tuesday, February 23, 2010
Wow!
I just got off the phone with a dear, dear friend...and she mentioned she's been avoiding a call to me because she doesn't know what to say to me :( I have had my share of disappointments in the friend department since starting my journey with radiation and then chemo but I never dreamed some of it was because they didn't know what to say to me.
Let me say this to you...I am the type of person who releases emotions by talking about it. I have been this way all my life and I heal by getting it out. I realize that not everyone is like me but for me, I need this. So if you are hanging back because you don't know what to say, ask. I am not offended by the questions, it actually helps me. I have to assume some just don't care and that's all right. They aren't truly my friends...a quote I found recently states; "some are only friends in name." I've come to this sad realization recently. My point is sharing this with you is please don't hang back because you don't know what to say. I need your support right now. We, as a family are in crisis mode and struggling to deal with all that is coming our way.
My friend said she was glad she called. She was able to share her fears for me...with me. It helped her, too. She hadn't realized (in all the years she's known me) that I need that. I just wanted to put that out there. If you arent' comfortable with that approach, I get that, too. If ya don't care, I already figured that out!
Loving, delicious meals provided by (sounds like an advertisement, huh?) the Ruiz, Mayse, Feix and Meza families. You are all just too amazing! My kids are having the time of their lives. They feel the love, love the food and get a kick out of inviting you into our home :-) We love you all and thank you for standing by us and making us fat! Haha-just kidding!
I'll talk to you on Thursday once I meet with the doc...
Let me say this to you...I am the type of person who releases emotions by talking about it. I have been this way all my life and I heal by getting it out. I realize that not everyone is like me but for me, I need this. So if you are hanging back because you don't know what to say, ask. I am not offended by the questions, it actually helps me. I have to assume some just don't care and that's all right. They aren't truly my friends...a quote I found recently states; "some are only friends in name." I've come to this sad realization recently. My point is sharing this with you is please don't hang back because you don't know what to say. I need your support right now. We, as a family are in crisis mode and struggling to deal with all that is coming our way.
My friend said she was glad she called. She was able to share her fears for me...with me. It helped her, too. She hadn't realized (in all the years she's known me) that I need that. I just wanted to put that out there. If you arent' comfortable with that approach, I get that, too. If ya don't care, I already figured that out!
Loving, delicious meals provided by (sounds like an advertisement, huh?) the Ruiz, Mayse, Feix and Meza families. You are all just too amazing! My kids are having the time of their lives. They feel the love, love the food and get a kick out of inviting you into our home :-) We love you all and thank you for standing by us and making us fat! Haha-just kidding!
I'll talk to you on Thursday once I meet with the doc...
Tuesday, February 16, 2010
Is this deja vu??
No chemo today. Liver stopped working again. Sheesh! What's it gonna take to get this show on the road and continue forward.
I suspected all wasn't right, I was feel crumby again. I have the next few days to get that sucker working again. Any ideas? I will go back for more blood work. I am the most frequent flyer at the lab. They are nice and take good care of my one good vein, although it has started to protest again (not healing and bleeding). What's a girl to do?!
My appointment with the doc will follow the blood tests and he will decide what on Earth to do with me. He came out into the waiting room shaking his head at me. He mentioned maybe decreasing doses again. One's got to ask though, will this still work at such drastically lower doses???
We are seriously entertaining the idea of travelling to the cancer centers (both out of state) that have experience with these pesky tumors. The problem is I need a support system while there and my kids need at least one parent. Insurance won't cover it so we are just in the thinking phase. Oh so many dilemmas! It's tough to chose which one to tackle first.
Yummy tacos tonight from Gerrie! Thank you sooooo much!!
I suspected all wasn't right, I was feel crumby again. I have the next few days to get that sucker working again. Any ideas? I will go back for more blood work. I am the most frequent flyer at the lab. They are nice and take good care of my one good vein, although it has started to protest again (not healing and bleeding). What's a girl to do?!
My appointment with the doc will follow the blood tests and he will decide what on Earth to do with me. He came out into the waiting room shaking his head at me. He mentioned maybe decreasing doses again. One's got to ask though, will this still work at such drastically lower doses???
We are seriously entertaining the idea of travelling to the cancer centers (both out of state) that have experience with these pesky tumors. The problem is I need a support system while there and my kids need at least one parent. Insurance won't cover it so we are just in the thinking phase. Oh so many dilemmas! It's tough to chose which one to tackle first.
Yummy tacos tonight from Gerrie! Thank you sooooo much!!
Monday, February 15, 2010
Life Continues On...
Treatment went ahead as scheduled on Tuesday with my shots to increase blood cell production following on Wednesday, Thursday and Friday. I think I am getting to the point where I could actually do it myself. I have never been afraid of needles and the shots don't hurt. I think, at this point, I could get past the psychological hang up of giving a shot. The shots do make my bones hurt. That is a bummer! This time around it didn't start until the second day but by the third shot I had horrible pains in my thighs that lasted a good two days. I am pretty good, too with pain but the constant side effect...one after another is getting very annoying. It pretty much just sucks!
The treatment itself was uneventful. They decreased the dose of Methotrexate to 40 (Mcg??). I'm still not sure what the unit of measurement is. When I asked why the doctor said I was originally getting 30 how could the decreased dose now be 40, she said something about squared. Technical lingo that isn't meant to be understood by the pin cushion, I guess. I'm a good pin cushion...sit down and shut up! Okay :-)
Tuesday was an okay day. I was mostly just tired. Wednesday was Brendon's 11th birthday so I tried with all my might to get up and keep moving to keep his day normal and special. I don't know that I succeeded but if there is any of my kids that have empathy and compassion for what I am going through, it is Brendon. I paid for that on Thursday. I had hoped that if I kept my body in motion I could train it to work through the chemo. I will try it again this week. I was feeling sick..and tired...and that horrible taste in my mouth...ugh! That is mostly what I try not to focus on!
As with every week (we are so incredibly blessed) we enjoyed the love and meals from great friends. I have to say that my kids aren't picky but some of the meals will replace my meals as their favorites (hey! No fair). By this I mean my lasagna was the favorite my kids have ever tasted. We have it every Christmas and on very special occasions. Yolanda made some on Tuesday that Justin came home from school asking for left overs....! That's a first :-) Mickey brought over yummy enchilada casserole (that I didn't even know ever existed until chemo) and juicy barbecue burgers from Karen. How will I ever live up to all of this when life returns to normal?? You guys are incredible! More than the meals, I value your friendship.
Thank you for checking in on us. We hit a rough patch every week and I am not going to lie. It is a struggle to keep physical and emotional health in check. Many of you know I am a cry er...and it operates as a release for me. Let me put it simply...there has been a lot of releasing!! You have touch the very core of my soul with your friendship and I only pray that I can be half the kind of friend in your time of need. You amaze and inspire me to keep moving...and I shall.
My next fight is tomorrow morning. God willing I will get past more than two treatments. I had a slight fever yesterday and I am feel sort of crummy, so I some what doubt the decrease will have an effect on my "freaked out" body. Only time and poison (haven't lost my sense of humor) will tell!!
Have a great day! I'll check in soon...
The treatment itself was uneventful. They decreased the dose of Methotrexate to 40 (Mcg??). I'm still not sure what the unit of measurement is. When I asked why the doctor said I was originally getting 30 how could the decreased dose now be 40, she said something about squared. Technical lingo that isn't meant to be understood by the pin cushion, I guess. I'm a good pin cushion...sit down and shut up! Okay :-)
Tuesday was an okay day. I was mostly just tired. Wednesday was Brendon's 11th birthday so I tried with all my might to get up and keep moving to keep his day normal and special. I don't know that I succeeded but if there is any of my kids that have empathy and compassion for what I am going through, it is Brendon. I paid for that on Thursday. I had hoped that if I kept my body in motion I could train it to work through the chemo. I will try it again this week. I was feeling sick..and tired...and that horrible taste in my mouth...ugh! That is mostly what I try not to focus on!
As with every week (we are so incredibly blessed) we enjoyed the love and meals from great friends. I have to say that my kids aren't picky but some of the meals will replace my meals as their favorites (hey! No fair). By this I mean my lasagna was the favorite my kids have ever tasted. We have it every Christmas and on very special occasions. Yolanda made some on Tuesday that Justin came home from school asking for left overs....! That's a first :-) Mickey brought over yummy enchilada casserole (that I didn't even know ever existed until chemo) and juicy barbecue burgers from Karen. How will I ever live up to all of this when life returns to normal?? You guys are incredible! More than the meals, I value your friendship.
Thank you for checking in on us. We hit a rough patch every week and I am not going to lie. It is a struggle to keep physical and emotional health in check. Many of you know I am a cry er...and it operates as a release for me. Let me put it simply...there has been a lot of releasing!! You have touch the very core of my soul with your friendship and I only pray that I can be half the kind of friend in your time of need. You amaze and inspire me to keep moving...and I shall.
My next fight is tomorrow morning. God willing I will get past more than two treatments. I had a slight fever yesterday and I am feel sort of crummy, so I some what doubt the decrease will have an effect on my "freaked out" body. Only time and poison (haven't lost my sense of humor) will tell!!
Have a great day! I'll check in soon...
Saturday, February 6, 2010
Back on the Saddle!
Good news first! My liver appears to be fine...gallbladder fine...white blood counts fine (:-)..
My spleen is enlarged but I only know that from looking at the report. The doctor didn't seem bothered enough to mention it to me. Some of my blood work is still not in the normal range but I don't know what those values mean. Again, the doctor didn't explain them to me so either he isn't bothered by them or surprised. The biggest surprise of the day was the white blood cell count. I have not been doing the shots (per the doctor) and my counts doubled in a week. It's gotta be a mistake but I am living in the moment that something miraculous like that happened! Yeah!
I know you say those kind of mistakes don't happen but believe me...it can happen. Look at my CT reports and you wouldn't believe the mistake they made. It's somewhat comical the errors that can happen in my case... The doctor writing the CT report compared my most recent study with that of previous studies. The problem is he compared the March 2008 study to the one I had last week. That study was from tumor #1 (surgery April 2008 removed the whole thing with clear margins). We are on tumor #3! Not surprisingly, the reports states the tumors appear differently than in March 2008. I hope so! They aren't the same thing!! One would think the doctor who has written every report, for every study I have EVER had regarding these pesky little tumors would be aware of the history, especially since he had my intake form in his hot little hands!! Hey, I am special....special things happen to me.
The good news is I don't think it had an impact on the information that was obtained by the current CT and he compared it also to the November 2009 study which perfectly pictured my pesky little tumors (#3). The CT last week gave a glimmer of hope. My tumors are "stable". In my fantasyland, I was hoping for shrinkage but that probably isn't realistic. Stable is the next best thing. I confirmed with the doc before I got excited. Stable refers to NO CHANGE. They didn't shrink but they didn't grow. When I asked if he expected to see shrinkage at this early stage in treatment, he said no. So one could conclude that perhaps this treatment is working??? I hope so. It has been difficult and there is a long road ahead!
Up next...I start back on chemo next Tuesday. He has concluded that I am not tolerating this dosage very well. We won't get past two treatments if I stay at the current dosage. He thinks we should decrease the dosage of Methotrexate by 30%. The vinblastine will remain the same. I then posed him the question, "can we then expect this lessor dosage to be less effective?" Remember, we are already (before the decrease) operating at about a 40% chance of it actually working. He offered that one could effectively argue that my body is more sensitive to the medication, metabolizes it slower and therefore can be just as effective because it hangs around longer in my body and it is sensitive to it's effects. Yeah! I love it!
What I don't love is that starting Tuesday I go down my path again. It's a lonely road. It really, really sucks! I pray that I tolerate it better and my body does with it what it is supposed to do!
Loving meals this time around have kindly been provided by the Naranjo, Hererra, Van de Brooke, Santiago, Woo-Sam, Milton and Mendez families. It is from your friendship that we draw the strength to get through this with the least amount of harm. The kids look forward to seeing your families and are learning such a valuable lesson about love from you all. Thank you for wonderfully modeling acts of kindness that most are only able to talk about. My family gets to experience it! Thank you from the bottom of our very grateful hearts!!
My spleen is enlarged but I only know that from looking at the report. The doctor didn't seem bothered enough to mention it to me. Some of my blood work is still not in the normal range but I don't know what those values mean. Again, the doctor didn't explain them to me so either he isn't bothered by them or surprised. The biggest surprise of the day was the white blood cell count. I have not been doing the shots (per the doctor) and my counts doubled in a week. It's gotta be a mistake but I am living in the moment that something miraculous like that happened! Yeah!
I know you say those kind of mistakes don't happen but believe me...it can happen. Look at my CT reports and you wouldn't believe the mistake they made. It's somewhat comical the errors that can happen in my case... The doctor writing the CT report compared my most recent study with that of previous studies. The problem is he compared the March 2008 study to the one I had last week. That study was from tumor #1 (surgery April 2008 removed the whole thing with clear margins). We are on tumor #3! Not surprisingly, the reports states the tumors appear differently than in March 2008. I hope so! They aren't the same thing!! One would think the doctor who has written every report, for every study I have EVER had regarding these pesky little tumors would be aware of the history, especially since he had my intake form in his hot little hands!! Hey, I am special....special things happen to me.
The good news is I don't think it had an impact on the information that was obtained by the current CT and he compared it also to the November 2009 study which perfectly pictured my pesky little tumors (#3). The CT last week gave a glimmer of hope. My tumors are "stable". In my fantasyland, I was hoping for shrinkage but that probably isn't realistic. Stable is the next best thing. I confirmed with the doc before I got excited. Stable refers to NO CHANGE. They didn't shrink but they didn't grow. When I asked if he expected to see shrinkage at this early stage in treatment, he said no. So one could conclude that perhaps this treatment is working??? I hope so. It has been difficult and there is a long road ahead!
Up next...I start back on chemo next Tuesday. He has concluded that I am not tolerating this dosage very well. We won't get past two treatments if I stay at the current dosage. He thinks we should decrease the dosage of Methotrexate by 30%. The vinblastine will remain the same. I then posed him the question, "can we then expect this lessor dosage to be less effective?" Remember, we are already (before the decrease) operating at about a 40% chance of it actually working. He offered that one could effectively argue that my body is more sensitive to the medication, metabolizes it slower and therefore can be just as effective because it hangs around longer in my body and it is sensitive to it's effects. Yeah! I love it!
What I don't love is that starting Tuesday I go down my path again. It's a lonely road. It really, really sucks! I pray that I tolerate it better and my body does with it what it is supposed to do!
Loving meals this time around have kindly been provided by the Naranjo, Hererra, Van de Brooke, Santiago, Woo-Sam, Milton and Mendez families. It is from your friendship that we draw the strength to get through this with the least amount of harm. The kids look forward to seeing your families and are learning such a valuable lesson about love from you all. Thank you for wonderfully modeling acts of kindness that most are only able to talk about. My family gets to experience it! Thank you from the bottom of our very grateful hearts!!
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