So, the good part in all of this crazy cancer stuff is the notion that my eggs can be frozen and having a family is something Jeremy and I will actually be able to do. Amazing stuff really. So after my emergency surgery on Friday last week, I headed up to Portland on Saturday morning for my eggs to be collected from my ovaries and frozen for a period of time until we are able to have a family.
I honestly didn't want to go, I was still very sore from surgery the day before, but this was it, no stopping, no turning back, no nothing but yes, we are going. Jeremy was incredible and helped me through it all. With out him I wouldn't have done it. Without him all of this would have been difficult. I know he is struggling through all of this too, and he hated seeing me go through two seperate surgeries in a row, but he also knew if he didn't make me get into that car I would regreat it later.
We made it to Portland way early, and just sat in the car. We laughed, I mean really laughed. It was fun to just kind of be immobilized in time, in a parking garage, with nothing else to do, but talk. And I don't even remember what we talked about, but I remember laughing. He always has a way of doing that, but lately I don't see it as funny, for some reason I did that morning. And we headed in.
I got all gowned up, emptied the bladder, laid on the table, got the IV's going through my PICC line of course, and I was off to surgery to gather me some eggs. I remember going in, getting situated on the table, and then I was back in the room, listening to conversations around me. Oh, and the cramping, what an incredible feeling.... not comfortable, but bearable. They have drugs for that. I think waking up from that was much more painful than the day before when my expander was removed. But I had an infection with the expander and that was causing all kinds of pain on its own, so removing it made everything feel better.
The results.... they were able to gather 19 eggs that seemed large enough to take, with only 14 mature enough to be frozen in time. And the odds go down from there. Of those 14 only 75% will make it thru the thaw = 10 and then 75% of those will make it to the fertilization process, so 7-8. And then 75% of those will actually become fertilized = 5 and half of those will make it.... so maybe 3 when all is said and done. I was hoping for more. But that is 3 more than I had before the process started, so I figure I am ahead of the game. I love competition.
Monday, November 29, 2010
Post Surgery #2
In light of my most recent surgery, things are going well. Considering the enormous amount of pain I was in all of last week because of my infection and the real inability to function without pain pills, to functioning just a few days after surgery without pills is wonderful. I still am anxious about my bandages coming off, anxious of what I am going to look like, what others will think that don't know but when you stare it will be obvious I have only one "boob."
Don't even start to kid yourself and say, "Well, now, Stephanie, you can't worry about that," or "nobody is staring," or "how do you know?" Really, come on, we all do it.... stare at the guy with one leg, the lady with the beard, or the child with tubes in their noses. We do it, we all do it. Can't help but notice. And then we have comments, in our heads, but they are comments. I don't want to be part of those comments, thus the reason I went straight to expanders so no one one would know I had no "boobs." Even someone I hadn't seen in forever wouldn't know because I would be back to normal in no time. Normal..... not sure I remember what that was like. Constant pain, and managing of it, are what I experience on a daily basis. That is my new normal. And now it involves one less bump on my chest.
Who knew I would be this attached by something so unfunctional in my life as I know it. They just got in the way, caused pain when hit, and sagged alot in my aging process. Why am I so attached to these bumps? I don't know. It doesn't define me, doesn't make me, doesn't do anything, or do they? It will be at least six months before the expander goes back in, and we try again, so well after chemo and the healing process that will take. It is amazing our bodies and the abuse they can take to be better.
I will be better, I am better now, physically.... emotionally, mentally are the hard ones I am going to struggle through. My image doesn't define me, but it sure is a big part and not everyone gets to see the inside on a daily basis - my outside is always showing.
Don't even start to kid yourself and say, "Well, now, Stephanie, you can't worry about that," or "nobody is staring," or "how do you know?" Really, come on, we all do it.... stare at the guy with one leg, the lady with the beard, or the child with tubes in their noses. We do it, we all do it. Can't help but notice. And then we have comments, in our heads, but they are comments. I don't want to be part of those comments, thus the reason I went straight to expanders so no one one would know I had no "boobs." Even someone I hadn't seen in forever wouldn't know because I would be back to normal in no time. Normal..... not sure I remember what that was like. Constant pain, and managing of it, are what I experience on a daily basis. That is my new normal. And now it involves one less bump on my chest.
Who knew I would be this attached by something so unfunctional in my life as I know it. They just got in the way, caused pain when hit, and sagged alot in my aging process. Why am I so attached to these bumps? I don't know. It doesn't define me, doesn't make me, doesn't do anything, or do they? It will be at least six months before the expander goes back in, and we try again, so well after chemo and the healing process that will take. It is amazing our bodies and the abuse they can take to be better.
I will be better, I am better now, physically.... emotionally, mentally are the hard ones I am going to struggle through. My image doesn't define me, but it sure is a big part and not everyone gets to see the inside on a daily basis - my outside is always showing.
Friday, November 26, 2010
Surgery #2 - Expander Out
So, I leave in a few minutes to get my left expander out. Not looking forward to it one bit. I hate the thought of going back under to have my chest cut open and the thing removed. I will then have a right one but a completely flat chest on the left. It won't get put back in until after chemo when my body is ready for more surgery. I am scared but becoming grateful. My left chest is swollen, hard and very, very red so it does need to come out. There is so much puss and gross stuff underneath the skin that it needs to be out of there. I get another drain too, can't wait for that.
This is supposed to be an in and out surgery and home later today..... I hope. Then tomorrow I head to Portland for my egg retrieval. Yeah, two surgeries back to back. Everyone wants that, right?
I lost control somewhere......
This is supposed to be an in and out surgery and home later today..... I hope. Then tomorrow I head to Portland for my egg retrieval. Yeah, two surgeries back to back. Everyone wants that, right?
I lost control somewhere......
Monday, November 22, 2010
My Friend the Infection
Sometimes I just don't understand how I could have this much bad luck. Why me? Why now? Why ever? I think this is where my good attitude and great drive might be fading.... and fast. Life sucks for me right now and I don't see it getting better in the near future.
So, last Thursday night, Friday morning, I started having pain on my left side. It was uncomfortable, but not to the point of needing pain pills, I was just annoyed. No temp either, so we are good. As Friday wore on, it proressively got more painful, and I needed pain pills to get through the night. And so the weekend goes on, and the pain was getting worse, and I had an elevated temp, but nothing real concerning - 100.4. My grandma had her 90th birthday party at Papa's Pizza, and nothing was going to stop me from going, how many times does a person turn 90 anyways, and besides a lot of the family would be there so I wanted to see them. And pain pills would get me through it.
Sunday night I was getting more and more concerned, so was Jeremy, but I just wasn't having the huge temp so I didn't feel the need to call any doctor. And besides what would they do? Just look at it and say it looks good, no worries, just rest, that is what they always say - just rest. I guess they don't understand that just resting doesn't pay the bills, at this point I wish it did, trouble is coming fast in that category.
Today, I woke up and could barely get out of bed to mix up my medication for the egg freezing procedure later on. My left arm and chest felt like someone was crushing them. And took my temp again and again it was actually normal - 98.4, so I was OK, and just needed to rest. I did call the doctor and he said to just stay resting for the day, if it gets worse give me a call. Called my boss to let him know, yet again, I wouldn't be in, and was struggling through all of this. At around noon, Joanne Stutzman called, one of the socail workers for the support group and such to check in on me. I told her everything and she said that I needed to check for redness and really should go in to see someone. I said OK, and we hung up. Went to the mirror and there it was... a very red and swollen left boob, well really my pecoral muscle stretched, but you know what I mean. Called Havard's office, and he wanted to see me at 2:30pm today. Called my mom to come get me and we went.
As soon as he looked at it, he knew..... and the expander needed to come out. And here come the tears....... wonderful! So, because I am in the process of harvesting my eggs, we would not do surgery this week, unless it gets worse. He pulled out about 5-6 ounces of fluid around the expander, it made it feel a little better, but not alot. It will get cultured and then we will know for sure how to fight it. For now I am on oral antibiotics and will get an IV line tomorrow afternoon to take the drugs that way. I will then have my eggs harvested this weekend sometime, then surgery sometime after to get the left expander taken out, and I will have my chemo port put in during the surgery as well. My life really sucks right now and is really painful, wish the pain meds would start working. How am I going to get through all of this?
The worse part is, if the skin on my left side starts to get creases, dimple or anything like that it may not expand very well when they put them back in, and there would be more surgery to get skin from somewhere else. And I am going to be lop-sided, and I don't want people to notice. I know they are only just boobs, but who wants to look at themselves in a shirt and see oneside with lumps and one side without? I know I don't. Why can't I just have something good happen to me right now? So back to resting and doing nothing - wish it paid the bills.
So, last Thursday night, Friday morning, I started having pain on my left side. It was uncomfortable, but not to the point of needing pain pills, I was just annoyed. No temp either, so we are good. As Friday wore on, it proressively got more painful, and I needed pain pills to get through the night. And so the weekend goes on, and the pain was getting worse, and I had an elevated temp, but nothing real concerning - 100.4. My grandma had her 90th birthday party at Papa's Pizza, and nothing was going to stop me from going, how many times does a person turn 90 anyways, and besides a lot of the family would be there so I wanted to see them. And pain pills would get me through it.
Sunday night I was getting more and more concerned, so was Jeremy, but I just wasn't having the huge temp so I didn't feel the need to call any doctor. And besides what would they do? Just look at it and say it looks good, no worries, just rest, that is what they always say - just rest. I guess they don't understand that just resting doesn't pay the bills, at this point I wish it did, trouble is coming fast in that category.
Today, I woke up and could barely get out of bed to mix up my medication for the egg freezing procedure later on. My left arm and chest felt like someone was crushing them. And took my temp again and again it was actually normal - 98.4, so I was OK, and just needed to rest. I did call the doctor and he said to just stay resting for the day, if it gets worse give me a call. Called my boss to let him know, yet again, I wouldn't be in, and was struggling through all of this. At around noon, Joanne Stutzman called, one of the socail workers for the support group and such to check in on me. I told her everything and she said that I needed to check for redness and really should go in to see someone. I said OK, and we hung up. Went to the mirror and there it was... a very red and swollen left boob, well really my pecoral muscle stretched, but you know what I mean. Called Havard's office, and he wanted to see me at 2:30pm today. Called my mom to come get me and we went.
As soon as he looked at it, he knew..... and the expander needed to come out. And here come the tears....... wonderful! So, because I am in the process of harvesting my eggs, we would not do surgery this week, unless it gets worse. He pulled out about 5-6 ounces of fluid around the expander, it made it feel a little better, but not alot. It will get cultured and then we will know for sure how to fight it. For now I am on oral antibiotics and will get an IV line tomorrow afternoon to take the drugs that way. I will then have my eggs harvested this weekend sometime, then surgery sometime after to get the left expander taken out, and I will have my chemo port put in during the surgery as well. My life really sucks right now and is really painful, wish the pain meds would start working. How am I going to get through all of this?
The worse part is, if the skin on my left side starts to get creases, dimple or anything like that it may not expand very well when they put them back in, and there would be more surgery to get skin from somewhere else. And I am going to be lop-sided, and I don't want people to notice. I know they are only just boobs, but who wants to look at themselves in a shirt and see oneside with lumps and one side without? I know I don't. Why can't I just have something good happen to me right now? So back to resting and doing nothing - wish it paid the bills.
Thursday, November 18, 2010
Oregon Reproductive Medicine
So, this morning was much easier to leave on time, actually early. This was good news I was getting so it seems and couldn't wait to get there. Jeremy went to work at his 6am time and so I picked him up in Salem on the way, we stopped at Starbucks and were on our way. Nothing eventful as far as driving this time, found it, parked, got lost, then Jeremy read the big sign on the wall and we headed the right way. Yeah for him!
We are still early, about 45 minutes, but we are here. And we wait.
"Stephanie.." that's my name, we are up. Mind my heart is racing, again my blood pressure was really high, I had a ton of anxiety.
After the preliminaries we meet Dr. Bankowski. Very soft spoken, nice man, and he begins with the woman and her cycle. Explaining how ovulation happens, the chemicals involved, and how the procdure works. I listened intently to the entire thing and did really well holding it together, and as he ended I just couldn't keep it in anymore, I just sobbed and sobbed and sobbed. Jeremy wrapped his arms around me and we just sat there. Right when I thought something would never happen, here I was sitting here with a doctor and he is going to give me all the right stuff to give us a chance of having our very own child when this is all done. Are you kidding me, this great news doesn't happen to us, all we have gotten is bad news, this is a dream. The doctor sat there quietly.
When I was done crying, we went into an exam room and had to do a vaginal ultrasound to see if I was even a candidate. There is a timing issue with all of this and it needed to all start on the third day of my period . . . . today was day 3. So, we needed to look at my ovaries to see how many eggs I even had in there at my age. I was so excited but frightful of what he might find since I am older and would I have enough eggs to even do this. But I had hope it would be great.
"Ok, so this is your right ovary and these are the eggs - the black spots. Your biggest one is about 7mm.... There are 12 in there, that is good. And to your left one there is about 12 more, looks great." He checks for polyps or anything else that might be a hinderance and we are done. Things are awesome and we can move forward with everything. Still not sure what that means or how this all works, but it does.
Now we meet with the financial person... OK here comes the bad news and we are going to walk right out of here because I don't have any money right now to give them. We go over the costs associated, the funds we are going to apply for through Fertile Hope and the Live Strong foundation. The heavily disounted price is something we will need to pay but can pay over time, and on and on and on. No mention of needing money now. Then we move to another room for teaching.
Dr. Bankowski comes back in and says everything looks great, and we are going to start now. He was going to wait and push my body through another cycle but things looked really good right now and he doesn't want to make me wait for chemo any longer than I need to. My egg production is like that of a 25 year old, and the meds I will be on are very low dose for starters, something they would give to a 22 year old donor. Also my blood work looked great, there are no issues. Things are looking good.
WOW, there is a lot to learn when you are going to have your eggs harvested, and all the meds you have to take and exact times. UGH! I have never been very good at taking pills, let alone now I have to give myself shots, are you kidding me. Not just one a day, but two and in a couple of days it is three a day.... Yeah for me. The teaching session lasted about 2 hours and Jeremy and I learned how to inject them into my belly, the way to mix them, how to use the needles, etc. Jeremy did awesome, and I think he rather enjoyed the thought of sticking me with a needle. But when it came to give me my first shot in the office, he deferred to the nurse to give me my first one. Deep down I think he would rather not stick me with a needle.
Anxiety galore. Really, who likes or wants to be stuck with a stupid needle, surely not me. My hear is racing. But here comes the needle to my belly. Stick, ah sting, not so great, not so bad, all done, a little stinging and then a little muscle cramping feeling. Not that bad, but not great. The cramping feeling lasted about 10 minutes then it was over. Our teaching session was done, Carol left the room to get the doctor and the tears just started coming again. I felt overwhelmed, excited, like i was in a dream and I was going to wake up at any time. Jeremy says, "I still don't think this has all sunk in yet that this is really happening." He wrapped his arms around me and told me it was going to be alright. It felt good to have him there. He was being absolutley amazing throught the entire thing. He was coming back to the Jeremy that I needed through all of this. Things are going to be OK.
Dr. Bankowski comes back in, asks if there are anymore questions, good luck and we will see you in a couple of days. "OK," and we head out.
Next appointment is Friday, and then it could be every day, every other day, whatever my body is telling them when they take the tests - ultrasounds and blood draws. And we will harvest the eggs in 10-12 days. Going to be a ton of driving and gas money, hope its all worth it in the end.....
We are still early, about 45 minutes, but we are here. And we wait.
"Stephanie.." that's my name, we are up. Mind my heart is racing, again my blood pressure was really high, I had a ton of anxiety.
After the preliminaries we meet Dr. Bankowski. Very soft spoken, nice man, and he begins with the woman and her cycle. Explaining how ovulation happens, the chemicals involved, and how the procdure works. I listened intently to the entire thing and did really well holding it together, and as he ended I just couldn't keep it in anymore, I just sobbed and sobbed and sobbed. Jeremy wrapped his arms around me and we just sat there. Right when I thought something would never happen, here I was sitting here with a doctor and he is going to give me all the right stuff to give us a chance of having our very own child when this is all done. Are you kidding me, this great news doesn't happen to us, all we have gotten is bad news, this is a dream. The doctor sat there quietly.
When I was done crying, we went into an exam room and had to do a vaginal ultrasound to see if I was even a candidate. There is a timing issue with all of this and it needed to all start on the third day of my period . . . . today was day 3. So, we needed to look at my ovaries to see how many eggs I even had in there at my age. I was so excited but frightful of what he might find since I am older and would I have enough eggs to even do this. But I had hope it would be great.
"Ok, so this is your right ovary and these are the eggs - the black spots. Your biggest one is about 7mm.... There are 12 in there, that is good. And to your left one there is about 12 more, looks great." He checks for polyps or anything else that might be a hinderance and we are done. Things are awesome and we can move forward with everything. Still not sure what that means or how this all works, but it does.
Now we meet with the financial person... OK here comes the bad news and we are going to walk right out of here because I don't have any money right now to give them. We go over the costs associated, the funds we are going to apply for through Fertile Hope and the Live Strong foundation. The heavily disounted price is something we will need to pay but can pay over time, and on and on and on. No mention of needing money now. Then we move to another room for teaching.
Dr. Bankowski comes back in and says everything looks great, and we are going to start now. He was going to wait and push my body through another cycle but things looked really good right now and he doesn't want to make me wait for chemo any longer than I need to. My egg production is like that of a 25 year old, and the meds I will be on are very low dose for starters, something they would give to a 22 year old donor. Also my blood work looked great, there are no issues. Things are looking good.
WOW, there is a lot to learn when you are going to have your eggs harvested, and all the meds you have to take and exact times. UGH! I have never been very good at taking pills, let alone now I have to give myself shots, are you kidding me. Not just one a day, but two and in a couple of days it is three a day.... Yeah for me. The teaching session lasted about 2 hours and Jeremy and I learned how to inject them into my belly, the way to mix them, how to use the needles, etc. Jeremy did awesome, and I think he rather enjoyed the thought of sticking me with a needle. But when it came to give me my first shot in the office, he deferred to the nurse to give me my first one. Deep down I think he would rather not stick me with a needle.
Anxiety galore. Really, who likes or wants to be stuck with a stupid needle, surely not me. My hear is racing. But here comes the needle to my belly. Stick, ah sting, not so great, not so bad, all done, a little stinging and then a little muscle cramping feeling. Not that bad, but not great. The cramping feeling lasted about 10 minutes then it was over. Our teaching session was done, Carol left the room to get the doctor and the tears just started coming again. I felt overwhelmed, excited, like i was in a dream and I was going to wake up at any time. Jeremy says, "I still don't think this has all sunk in yet that this is really happening." He wrapped his arms around me and told me it was going to be alright. It felt good to have him there. He was being absolutley amazing throught the entire thing. He was coming back to the Jeremy that I needed through all of this. Things are going to be OK.
Dr. Bankowski comes back in, asks if there are anymore questions, good luck and we will see you in a couple of days. "OK," and we head out.
Next appointment is Friday, and then it could be every day, every other day, whatever my body is telling them when they take the tests - ultrasounds and blood draws. And we will harvest the eggs in 10-12 days. Going to be a ton of driving and gas money, hope its all worth it in the end.....
Portland Medical Oncologist
It is Tuesday, time to head to Portland to see the Medical Oncologist. Jeremy and I had planned on leaving by 7am, but it was later, much later - 7:45. What's amazing is how much all this absolutely drains you emotionally and then turns to your physical self. We are absolutely exhausted to say the least and I wish I could just lay in bed for a couple of days to just sleep after these last couple of days - what an emotional roller coaster..... And I will get to that.
We leave, late, and head to Portland, but not first before stopping at Starbucks of course and getting gas, pushing it even more. When you are getting bad news, it is hard to be in a rush to get there. And we're off. Besides one almost near death experience on 217N, we make it. And when I say near death, I mean it, cars all slammed on breaks, thank god pavement wasn't wet and my breaks work. I was able to stop the car before ramming into the PT Cruiser in front of us. How Jeremy stayed calm I have no idea. He did and then laughed when it was done. It was good. Needless to say my blood pressure was severly elevated when we got in to see the doctor.
Dr. Ali Conlin is her name, and she is most terrific. She talked with us for quite awhile and went over my reports with me, again how lucky I am considering most my age are never found until the tumor is 2-3cm and can be too late by then. My doctor saved me by her referring me early. She explained that what I have is what 70% of all breast cancer patients have. That only 10% is hereditary, meaning got it from a family history and the other 90% are just like me - very random. She said 1 in 8 women in a family will get breast cancer. I had always thought the stakes were higher in the family connection, nope. She was amazing. She is a specialist, breast cancer specialist, and comes from Sloan-kettering out of New York - the big cancer research place - amazing. We talked about my chemo and she explained to me that I definitely need it, but I am right on the edge. There is no evidence that shows by giving me a strong dose of chemo vs. a lighter dose betters my odds of recurrence so she doesn't see the need in putting my body through the big bout of chemo and create so much toxcicity within it. I will do four sessions, three weeks apart, lasting 12 weeks and be done with that, and then a pill a day for five years - Tamoxifen.
Then we talked about other things. Before this whole thing started Jeremy and I were ready to start having a family. Jeremy has, or should I say, had testicular cancer when he was 20 while in the Army. his teste was removed, and radiation performed. He goes in for checks all the time, and so far so good, no reccurence. So we were in that process of looking into him more and then WHAM, I get breast cancer, game over...... And we don't have $10,000 floating around just to go in and see some fertility specialist to get anything done now so we may have a chance after this whole thing is over. I cried, we cried, for a long time over it, came to the realization it wasn't ever going to happen and that is that.
But sitting there talking to Dr. Conlin, she says if it is something we want we need to call this place, and talk to them about coming in and getting my eggs frozen. She will give me a month to do it before I start chemo, but that is all. normally they like you to start on the 6th week mark and I am passed that. This would put me at the 10 week mark, and she says that would be fine, for she doesn't want me to have the regreat of not doing this if children is something we wanted. I take the number, say thank you, and we leave.
Once out, Jeremy and I talked about it, and decided we would call. Didn't have much hope in it actually happening, again we don't have that kind of money anywhere, but I knew my mom would help, she always does, and never holds it over my head, and she really doesn't have it, but she would help...... She is most fantastic like that. I called.
Talked to Corby, she got my information and I would be put in something called a Fast Track and Andrea would be the nurse following me. Corby would email me information and she set up an appointment for us the following day at 10AM at the Oregon Reproductive Medicine. That was that. We head home.
I was so excited to get home and read the email, but also knew there was probably still no way of this happening, we didn't have that kind of money. But I kept little hope. Got home, read the email, and no where did it discuss money, the cost. Jeremy and I decided I should call them because we didn't want to waste anyone's time by keeping this appointment if they wanted money up front to pursue it.
Andrea talked to me.....
This is a time when we don't want this to be about money and more about getting yourself better and well, and then being able to have the family you wanted. This service is heavily discounted to our cancer patients and you can pay all or little and take your time paying it off. This is something we truly believe in and want to do our best to do this for you.
We talked a little more, I cried alot more, hung up and let the sobbing begin. How does this happen, good news in the middle of so much bad. Tears won't stop..... I think my angel is still there.
We leave, late, and head to Portland, but not first before stopping at Starbucks of course and getting gas, pushing it even more. When you are getting bad news, it is hard to be in a rush to get there. And we're off. Besides one almost near death experience on 217N, we make it. And when I say near death, I mean it, cars all slammed on breaks, thank god pavement wasn't wet and my breaks work. I was able to stop the car before ramming into the PT Cruiser in front of us. How Jeremy stayed calm I have no idea. He did and then laughed when it was done. It was good. Needless to say my blood pressure was severly elevated when we got in to see the doctor.
Dr. Ali Conlin is her name, and she is most terrific. She talked with us for quite awhile and went over my reports with me, again how lucky I am considering most my age are never found until the tumor is 2-3cm and can be too late by then. My doctor saved me by her referring me early. She explained that what I have is what 70% of all breast cancer patients have. That only 10% is hereditary, meaning got it from a family history and the other 90% are just like me - very random. She said 1 in 8 women in a family will get breast cancer. I had always thought the stakes were higher in the family connection, nope. She was amazing. She is a specialist, breast cancer specialist, and comes from Sloan-kettering out of New York - the big cancer research place - amazing. We talked about my chemo and she explained to me that I definitely need it, but I am right on the edge. There is no evidence that shows by giving me a strong dose of chemo vs. a lighter dose betters my odds of recurrence so she doesn't see the need in putting my body through the big bout of chemo and create so much toxcicity within it. I will do four sessions, three weeks apart, lasting 12 weeks and be done with that, and then a pill a day for five years - Tamoxifen.
Then we talked about other things. Before this whole thing started Jeremy and I were ready to start having a family. Jeremy has, or should I say, had testicular cancer when he was 20 while in the Army. his teste was removed, and radiation performed. He goes in for checks all the time, and so far so good, no reccurence. So we were in that process of looking into him more and then WHAM, I get breast cancer, game over...... And we don't have $10,000 floating around just to go in and see some fertility specialist to get anything done now so we may have a chance after this whole thing is over. I cried, we cried, for a long time over it, came to the realization it wasn't ever going to happen and that is that.
But sitting there talking to Dr. Conlin, she says if it is something we want we need to call this place, and talk to them about coming in and getting my eggs frozen. She will give me a month to do it before I start chemo, but that is all. normally they like you to start on the 6th week mark and I am passed that. This would put me at the 10 week mark, and she says that would be fine, for she doesn't want me to have the regreat of not doing this if children is something we wanted. I take the number, say thank you, and we leave.
Once out, Jeremy and I talked about it, and decided we would call. Didn't have much hope in it actually happening, again we don't have that kind of money anywhere, but I knew my mom would help, she always does, and never holds it over my head, and she really doesn't have it, but she would help...... She is most fantastic like that. I called.
Talked to Corby, she got my information and I would be put in something called a Fast Track and Andrea would be the nurse following me. Corby would email me information and she set up an appointment for us the following day at 10AM at the Oregon Reproductive Medicine. That was that. We head home.
I was so excited to get home and read the email, but also knew there was probably still no way of this happening, we didn't have that kind of money. But I kept little hope. Got home, read the email, and no where did it discuss money, the cost. Jeremy and I decided I should call them because we didn't want to waste anyone's time by keeping this appointment if they wanted money up front to pursue it.
Andrea talked to me.....
This is a time when we don't want this to be about money and more about getting yourself better and well, and then being able to have the family you wanted. This service is heavily discounted to our cancer patients and you can pay all or little and take your time paying it off. This is something we truly believe in and want to do our best to do this for you.
We talked a little more, I cried alot more, hung up and let the sobbing begin. How does this happen, good news in the middle of so much bad. Tears won't stop..... I think my angel is still there.
Friday, November 12, 2010
Portland Calling
Dr. Conlin's office calls to set up my appointment, goes through the questions: last name, birthdate, address. Then she asks me for my phone number, I pause at this one thinking, "You called me, you should have it right there in front of you...." I didn't remind her of that and told her, but it was quite a long pause. Then she says (this is where I laugh), "So we have nothing for next week and looks like we have a couple appointments available the following week."
"Uh, that isn't going to do. I am at six weeks since surgery on Tuesday, and I MUST start chemo treatment soon. I will see whatever doctor is available."
Pause....and she says, and I am not kidding (remember she knows my address, city Albany, just asked me), "Well, do you mind traveling? She has office hours here only one day a week, but in her other office she has more choices."
Hahahahahahahaha..... this is not laughter of ha-ha you are funny, but rather, ha-ha, are you that stupid?
"I am already traveling, I live in Albany, so anywhere I go would be traveling. Where are her other offices?"
"Beaverton," is the response.
Picture this..... Phone goes off the year, to the sky, fake scream, breath, count 10, and "That is just fine, please get that scheduled."
Tuesday, November 16th, 10AM, I see Dr. Conlin in Beaverton, suburb of Portland, already traveling, to get my plan started.
Oh, how I love waiting...........
"Uh, that isn't going to do. I am at six weeks since surgery on Tuesday, and I MUST start chemo treatment soon. I will see whatever doctor is available."
Pause....and she says, and I am not kidding (remember she knows my address, city Albany, just asked me), "Well, do you mind traveling? She has office hours here only one day a week, but in her other office she has more choices."
Hahahahahahahaha..... this is not laughter of ha-ha you are funny, but rather, ha-ha, are you that stupid?
"I am already traveling, I live in Albany, so anywhere I go would be traveling. Where are her other offices?"
"Beaverton," is the response.
Picture this..... Phone goes off the year, to the sky, fake scream, breath, count 10, and "That is just fine, please get that scheduled."
Tuesday, November 16th, 10AM, I see Dr. Conlin in Beaverton, suburb of Portland, already traveling, to get my plan started.
Oh, how I love waiting...........
Appointment with Medical Oncologist
So, after finding out my score yesterday, I now had a meeting with my medical oncologist to go over the findings. I know what you all are thinking, "How in the world did she get in so fast?!"
Ha ha the power of cancellations and the right time. Someone had cancelled and I said yes, sign me up.
I was late for my appointment - imagine that - and they get us into a room pretty quickly. Jeremy assumes is usual role, slumped in a chair, legs way out, arms crossed, blank stare - he really loves to be there, don't pay attention to the body language at all. I have asked him to please be more engaging, enthused, showed him how his body language is, and he said he got it, but here we are same posture, same face, same nothingness. Not sure why he comes.
So, Sarah comes in first with the H.E.R. Project to talk to me. Forgive me now for I cannot remember what this stands for and quite frankly, I am being too lazy to Google it. She was great, absolutely. Asks me about everything from first surgery to infection to where I am now. She wants to know if I want a chemo partner, somone who has been through chemo themselves, and could be there for me. I said, yes, of course, I don't want to go it alone.
She then pulls out a book, How to Help Your Wife (and yourself) Through Diagnosis, and says to Jeremy, "This would be a very beneficial book for you to read. It is informative with humor and written in a way that really understands the husband of a breast cancer wife."
Mind you, this entire time she is focused on Jeremy in his 'position' and he acknowledges her somewhat. She then extends the book out to him and he does nothing, like he doesn't notice the gesture. He has completely zoned out of the conversation and it shows. She goes to give it to him again and he snaps out of it or something and starts to lean forward and slowly takes it from her.
She says, "You don't have to read it, but it could be very helpful to you."
He says, "Yeah, I will take a look at it." Then hands it straight to me. Heaven forbid he hold on to anything and be responsible for something. We both know he won't read the book, so why he took it from her, who knows. Jeremy tends to lie just to get out of uncomfortable situations, so by saying "Yes, I will look at it," he is in the clear. "Phew, got out of that one," he thinks, and "Here you go wife, take care of this for me like everything else you take care of for me.
Knock, knock, knock...... Dr. Lee comes in and Sarah leaves, says she will call me later and look into my chemo partner.
Here we are, the score I have been waiting for, the plan I want to start..... ready, set, WAIT! There is no plan, there is no start, there is wait and see more doctors. Since my score is 18, on the cusp of OK and intermediate risk, stage I (practically terrific!), grade 3 (completely devastating), negative nodes and clear margins (hooray!), tumor size 1.5cm (middle of the road), and Her2 Negative/ER &PR Positive (another plus) and age (younger) she isn't sure what to do, how much, low dose, high dose, 4 sessions, full 8 sessions..... There aren't alot of people in my spot that she has seen to prove how much chemo time would be best and she wants me to see a specialist.
OK, great for the specialist, but seriously, why did I come in to hear that? Why didn't we get on the phone yesterday when I originally called and set up my appointment then with the specialist. Quite frankly I was glad to be on to a specialist and out of this doctor's care. It just seems like dragging feet is all I am getting and if I wouldn't have called on my own to check up on my score, I still wouldn't know.... UGH!
She leaves us in the room while she calls up to Providence in Portland to talk to their cancer specialists and make sure they can get me in. It takes awhile, we sit in silence pretty much waiting. I told Dr. Lee as she left that if they had a cancellation today, I would go now, I want this started. She said she would see.
Endless amounts of time went by, she comes back in. Says she spoke with the doctor and they aren't even sure what to do with my treatments and to give them some time. Dr. Lee lets me know they will call me to set up the appointment for next week and if I don't hear from them by Monday, then to give her a call.
"OK, sounds good," I say.
"Just give us a call when you get done with that and we will set up a follow up."
I get a flu shot while I am there and on my way out, I schedule the follow up. Unfortunately it isn't until December 3rd, and my 6 week mark is November 16th, and chemo should really be started by then. I told her nurse and her scheduler this wasn't acceptable to me and I had to get this started sooner, they said to call if I get in sooner with Portland and they would see about changing it to sooner if I got up there sooner. Apparently they don't know me very well either. I am pretty pushy, ask the right questions, I will get in Monday or Tuesday next week, duh.....
Ha ha the power of cancellations and the right time. Someone had cancelled and I said yes, sign me up.
I was late for my appointment - imagine that - and they get us into a room pretty quickly. Jeremy assumes is usual role, slumped in a chair, legs way out, arms crossed, blank stare - he really loves to be there, don't pay attention to the body language at all. I have asked him to please be more engaging, enthused, showed him how his body language is, and he said he got it, but here we are same posture, same face, same nothingness. Not sure why he comes.
So, Sarah comes in first with the H.E.R. Project to talk to me. Forgive me now for I cannot remember what this stands for and quite frankly, I am being too lazy to Google it. She was great, absolutely. Asks me about everything from first surgery to infection to where I am now. She wants to know if I want a chemo partner, somone who has been through chemo themselves, and could be there for me. I said, yes, of course, I don't want to go it alone.
She then pulls out a book, How to Help Your Wife (and yourself) Through Diagnosis, and says to Jeremy, "This would be a very beneficial book for you to read. It is informative with humor and written in a way that really understands the husband of a breast cancer wife."
Mind you, this entire time she is focused on Jeremy in his 'position' and he acknowledges her somewhat. She then extends the book out to him and he does nothing, like he doesn't notice the gesture. He has completely zoned out of the conversation and it shows. She goes to give it to him again and he snaps out of it or something and starts to lean forward and slowly takes it from her.
She says, "You don't have to read it, but it could be very helpful to you."
He says, "Yeah, I will take a look at it." Then hands it straight to me. Heaven forbid he hold on to anything and be responsible for something. We both know he won't read the book, so why he took it from her, who knows. Jeremy tends to lie just to get out of uncomfortable situations, so by saying "Yes, I will look at it," he is in the clear. "Phew, got out of that one," he thinks, and "Here you go wife, take care of this for me like everything else you take care of for me.
Knock, knock, knock...... Dr. Lee comes in and Sarah leaves, says she will call me later and look into my chemo partner.
Here we are, the score I have been waiting for, the plan I want to start..... ready, set, WAIT! There is no plan, there is no start, there is wait and see more doctors. Since my score is 18, on the cusp of OK and intermediate risk, stage I (practically terrific!), grade 3 (completely devastating), negative nodes and clear margins (hooray!), tumor size 1.5cm (middle of the road), and Her2 Negative/ER &PR Positive (another plus) and age (younger) she isn't sure what to do, how much, low dose, high dose, 4 sessions, full 8 sessions..... There aren't alot of people in my spot that she has seen to prove how much chemo time would be best and she wants me to see a specialist.
OK, great for the specialist, but seriously, why did I come in to hear that? Why didn't we get on the phone yesterday when I originally called and set up my appointment then with the specialist. Quite frankly I was glad to be on to a specialist and out of this doctor's care. It just seems like dragging feet is all I am getting and if I wouldn't have called on my own to check up on my score, I still wouldn't know.... UGH!
She leaves us in the room while she calls up to Providence in Portland to talk to their cancer specialists and make sure they can get me in. It takes awhile, we sit in silence pretty much waiting. I told Dr. Lee as she left that if they had a cancellation today, I would go now, I want this started. She said she would see.
Endless amounts of time went by, she comes back in. Says she spoke with the doctor and they aren't even sure what to do with my treatments and to give them some time. Dr. Lee lets me know they will call me to set up the appointment for next week and if I don't hear from them by Monday, then to give her a call.
"OK, sounds good," I say.
"Just give us a call when you get done with that and we will set up a follow up."
I get a flu shot while I am there and on my way out, I schedule the follow up. Unfortunately it isn't until December 3rd, and my 6 week mark is November 16th, and chemo should really be started by then. I told her nurse and her scheduler this wasn't acceptable to me and I had to get this started sooner, they said to call if I get in sooner with Portland and they would see about changing it to sooner if I got up there sooner. Apparently they don't know me very well either. I am pretty pushy, ask the right questions, I will get in Monday or Tuesday next week, duh.....
Thursday, November 11, 2010
My score
So, I couldn't wait any longer and had to know if they got my score in or not, the anticipation is killing me! I called Dr. Lee's office today, left a message reminding them I was waiting, and to call me back. I got a call within the hour. My score.... drum roll please...... 18! Now I know it is over 17, Dr. Lee said it would be, but is only one point over 17 so my chance of recurrence is lower at this time and that is something to celebrate. This is fantastic!
So, I go in tomorrow and meet with Dr. Lee, we go over everything and start chemo as soon as we can get it going.
I hope my scalp looks good bald....... My perspective is always changing....... things can always be worse, so celebrate the not so worse news.
So, I go in tomorrow and meet with Dr. Lee, we go over everything and start chemo as soon as we can get it going.
I hope my scalp looks good bald....... My perspective is always changing....... things can always be worse, so celebrate the not so worse news.
Wednesday, November 10, 2010
Oncotype Explanation
Yes, I am still waiting for Oncotype score, but I found this explanation of what it really is and why and thought it may be helpful to anyone that may want to understand its purpose more. I should hear next week what more score is and what chemo will consist of. Thank you for all your thoughts and prayers.
Oncotype DX®: The Oncotype DX test may be helpful when deciding whether additional (adjuvant) treatment with chemotherapy (after surgery) might be useful in women with certain early-stage breast cancers that usually have a low chance of coming back (stage I or II estrogen receptor–positive breast cancers without lymph node involvement). Recent data has shown it may also be helpful for patients with positive lymph nodes.
The test looks at a set of 21 genes in cells from tumor samples to determine a 'recurrence score', which is a number between 0 and 100:
Tests of gene patterns
Researchers have found that looking at the patterns of a number of different genes at the same time (sometimes referred to as gene expression profiling) can help predict whether or not an early stage breast cancer is likely to come back after initial treatment. Two such tests, which look at different sets of genes, are now available: the Oncotype DX® and the MammaPrint®Oncotype DX®: The Oncotype DX test may be helpful when deciding whether additional (adjuvant) treatment with chemotherapy (after surgery) might be useful in women with certain early-stage breast cancers that usually have a low chance of coming back (stage I or II estrogen receptor–positive breast cancers without lymph node involvement). Recent data has shown it may also be helpful for patients with positive lymph nodes.
The test looks at a set of 21 genes in cells from tumor samples to determine a 'recurrence score', which is a number between 0 and 100:
- Women with a recurrence score of 17 or below have a low risk of recurrence (coming back after treatment).
- Those with a score of 18 to 30 are at intermediate risk.
- Women with a score of 31 or more are at high risk.
Thursday, November 4, 2010
Pathology Report
Cancer sucks! That is all I have to say…. IT SUCKS!!!
My life lately has been a series of events that at times, seems out of control and crazy. Not having control and feeling helpless is hard for me, but I am learning… slowly. Right now my infection seems to be gone, at least it hasn’t come back since coming off of the antibiotics so cheering is in order – YEAH!!! As long as it doesn’t come back, then everything can go according to plan.
So, on Tuesday, the 2nd, I finally met my medical oncologist – Vickie Lee. What a great woman she is and comforting – very helpful. It was the day I learned “my plan” as far as the pathology report and what to expect or do next. Jeremy and I are waiting in the room for quite a while and she comes in.
“So, how did you know to come in, in the first place? You do have negative nodes,” she says.
“My gynecologist likes her patients to have a baseline mammogram before age 40 so I decided to get it over with and just schedule the thing.”
Dr. Lee, “So you weren’t sick, didn’t feel it, nothing?”
“Nope,” I answered.
“Amazing…..”
And we go on to talk about how I am feeling now, my road so far and she asked me if I had seen my pathology report, so we looked at it and she started talking.
“So the tumor was 1.5cm, and you are a grade 3……”
I just started crying and she paused and really I don’t remember much of what she said after that. You see I knew from all my reading and researching that grade 3 was the worst case scenario and meant it was very aggressive, my thought was, “I am dying.” I sobbed, and not just tears streaming down but full on sobbing, can’t breathe, feel closed in, and no talking. She held my hand, Jeremy rubbed my back, and she said, “But your nodes are negative, you are going to get through this.”
And that is the part I knew. The questions all made sense from the moment she stepped in – I can put two and two together. Dr. Lee was surprised with a grade 3 tumor, how it was possible the lymphnodes were negative? Un-freaking-believable. That was the justification for my tears, I had skirted death for now. I wouldn’t necessarily be fighting for my life, but fighting to make sure it didn’t come back again. She said to me that given six more months the conversation would have been different, it probably would have made it to my lymph system and by then it is a full on “get your dukes up” fight. Still sobbing, couldn’t stop. But this is how she put it into perspective – with a chart, circling my pathology stuff (oh how I love charts).
Better | Worse | ||
Size | < 1.0 cm | 1.0 – 2.0 cm | |
Grade | 1 | 2 | 3 |
Lymphnodes | Yes | ||
Estrogen | Negative | ||
Her-2 | Negative | Positive |
Then we talked about chemo and the oncotype. Since I am all those things above, I am a candidate for the oncotype. The scores she broke down again with 1-17 no chemo 17-31 middle of the road chemo and >31 is an attack with chemo. She knows that I will be above 17, but by how much, she doesn’t know. Because of my grade chemo is inevitable. Well, let me take that back… I could choose to not do any kind of chemo and my chances of a relapse are 32%. So with chemo and tamoxefin my chances of relapse are 9% over a ten year period. Still seems high to me, but I will take it, well there isn’t a choice not to at this point is there. Unless I want to play a game with death…. Uh, no thanks.
We talked more, I cried more, couldn’t stop really, Jeremy held me, Dr. Lee held my hand. Moment of weakness? I am allowed. In fact I have been having them a lot lately. Somehow, I still get out of bed in the morning and get motivated. I am determined I have an angel looking out for me, let’s call him Brian…….. thank you, Mr. Angel.
Subscribe to:
Posts (Atom)