So I'm now almost 3 weeks past my surgery. I've being meaning to post another entry, but have just had my mind on other things.
Fortunately, the surgery went really well - the surgeon wasn't quite sure what he would find when he looked up my nose, but luckily the tumor was at the distal end of the olfactory nerve. That means it was at the lower end, and not near or past the base of my skull. So the margins were clear and while he did have to remove the nerve completely, he only had to make a small hole in the base of my skull and he was able to cauterize it immediately and so the risk of a spinal fluid leak was a lot less. I woke up feeling really good and starving! I had no pain and only took a tylenol after 2 days of being flat on my back and enduring a very uncomfortable MRI on the last morning there.
I went in on Tuesday and was able to come home on Thursday. I was on bed rest for the next week until my follow up with the doctor. The only outstanding issue I had was that the vision in my right eye was blurry - and my right cheek was numb. The surgeon didn't poke about near my facial nerves, but I think the swelling internally might have caused it. So the MRI before I left the hospital was just to check that. But it didn't show anything, so I had a follow up with an optholmologist this week and since it's been getting better, she didn't think it was anything to worry about.
The positive from all of this is that the surgeon said if I was 80, he would stop after the surgery. He would feel confident that the cancer would not return in my lifetime. But being 32, he doesn't ever want it to come back. So that means that chemotherapy and radiation is still the next step. Damn - I was still hoping he would say - we had the wrong file and you don't have cancer. You don't have to shoot yourself full of hormones so you can have your eggs harvested. You don't have to lose your hair. No such luck!
Everything hit me hard this week when I met with my oncologist. Seeing bald people with bandages on their arms made me cry. The worst part was that I freaked myself out about the paperwork - hoping my fmla and short term was filled out. I was worried it would be approved. I don't know why I worried so much - the doctor said he would sign off on everything. I did get all my questions answered - and we got the schedule - C-day is November 12. First day, Cisplastin. Second and third days, VP-16. Fourth day, Nulesta. Then a 2 week break and then it begins again.
I cried more about all of this than I did about the surgery. I'm scared because I don't know what to expect. I don't how I will feel. I don't want to miss out on the next few months while WBC continues to grow as a toddler. But this is important. I need to go through this so that I have the rest of my life ahead of me. I'm just trying to remember that.
Saturday, October 20, 2012
Monday, September 24, 2012
Fertile Myrtle
I try not to tell lots of people this but here goes...getting pregnant with WBC was very easy. I prepared myself before we started trying to conceive. I got off the pill, exercised and lost weight, and used an app to track my cycle. So the first month we tried, we were successful.
So one of the first questions I asked my cancer team was about my fertility. How would treatment affect my fertility? Back when I was in la-la land thinking that a couple of shots of radiation would be all I would need to fix this stupid cancer, I wasn't thinking about fertility. Because concentrated radiation doesn't affect fertility. At least that's what I read when I researched fertility and radiation.
Then they dropped the bomb...
There is a 30-40 percent chance chemo will send me into menopause. If that happens, I will not be able to conceive. They suggested I see a fertility doctor about harvesting my eggs. My head was spinning. I'm trying to process the fact that I need to have another surgery and additional treatment. Now I have to decide about our future family and I have to decide as soon as possible.
The next week, we met with the Fertility Doc. He was very understanding - he explained how pregnancy happens and says one thing that has stuck with me: Even if you don't go into menopause, you will likely have your fertility affected in some way.
So now we're faced with making a decision. Do we chance it and hope that we can conceive naturally? Do we move forward with "fertility preservation"? Insurance does not cover this. We will have to come up with the money out of pocket. And it's due up front. No financing, no payment plan. My mom had already told me she could try to come up with the money to help us. The silver lining? There's a program through LiveStrong that will help pay for the medications. We just have to pay the doctor's fees - which are greatly discounted because I'm a cancer patient.
This is our back-up plan. Our insurance. It still won't be cheap, but we have the option to do IVF later if we need to. Unless I'm still semi Fertile Myrtle. And if that's the case and we are able to conceive, then we can donate the embryos to couples who need them.
Since I know nothing about fertility issues, I'm trying to play catch up every time I have an appointment. The plan as of today is this - I just started my new cycle, and normally I would start the pill. But because I'm having surgery, they don't want to put me on the pill because I'll be on bed rest and that could cause blood clots. Now I just have to call them a week or so after surgery and then I'll go in to meet with the doctor and start some ovulation-suppression meds.
So that's the latest on the journey...
So one of the first questions I asked my cancer team was about my fertility. How would treatment affect my fertility? Back when I was in la-la land thinking that a couple of shots of radiation would be all I would need to fix this stupid cancer, I wasn't thinking about fertility. Because concentrated radiation doesn't affect fertility. At least that's what I read when I researched fertility and radiation.
Then they dropped the bomb...
There is a 30-40 percent chance chemo will send me into menopause. If that happens, I will not be able to conceive. They suggested I see a fertility doctor about harvesting my eggs. My head was spinning. I'm trying to process the fact that I need to have another surgery and additional treatment. Now I have to decide about our future family and I have to decide as soon as possible.
The next week, we met with the Fertility Doc. He was very understanding - he explained how pregnancy happens and says one thing that has stuck with me: Even if you don't go into menopause, you will likely have your fertility affected in some way.
So now we're faced with making a decision. Do we chance it and hope that we can conceive naturally? Do we move forward with "fertility preservation"? Insurance does not cover this. We will have to come up with the money out of pocket. And it's due up front. No financing, no payment plan. My mom had already told me she could try to come up with the money to help us. The silver lining? There's a program through LiveStrong that will help pay for the medications. We just have to pay the doctor's fees - which are greatly discounted because I'm a cancer patient.
This is our back-up plan. Our insurance. It still won't be cheap, but we have the option to do IVF later if we need to. Unless I'm still semi Fertile Myrtle. And if that's the case and we are able to conceive, then we can donate the embryos to couples who need them.
Since I know nothing about fertility issues, I'm trying to play catch up every time I have an appointment. The plan as of today is this - I just started my new cycle, and normally I would start the pill. But because I'm having surgery, they don't want to put me on the pill because I'll be on bed rest and that could cause blood clots. Now I just have to call them a week or so after surgery and then I'll go in to meet with the doctor and start some ovulation-suppression meds.
So that's the latest on the journey...
Saturday, September 15, 2012
Waking Up Crying...
So this is my first try at this. I read a lot of food and lifestyle blogs, but this is different. This is the start of my journey with cancer.
It's been an insane few days. About 3 weeks ago, I had surgery to remove a polyp in the right side of my nose and to fix a deviated septum on the left. When I saw my doctor a week post-op, he told me it wasn't a polyp, but a very rare tumor called an olfactory neuroblastoma. Of course, I had gone to this visit expecting to just have my splint removed, so my husband Chris was in the waiting room keeping our 14 month old Christopher busy. I had to make follow up appointments before we had a moment of privacy. So I got to tell my husband in an elevator that I had cancer.
So fast forward to two days ago. We go to the major hospital 50 minutes from our house to meet with the multidisciplinary team. Of course, the nurse tells me that 7 people are coming in and then takes my blood pressure - so for the girl who consistently has perfect blood pressure, seeing 132/85 made me even more upset!
Having lived through the last week not knowing anything, it was somewhat of a relief when the team of doctors told me that they were recommending the following - surgery, chemo and radiation. And that I should expect that all of this will take 6 months. And my chances of having another baby after chemo is 70%. But I can have my eggs harvested so that we have a better chance of having another baby. My head was spinning. They needed the room for the next patient, so we had to move down the hall. We talked to the social worker and after about an hour, I had an appointment scheduled several hours later for a PET scan and several doctor's appointments over the next few days.
I met with the surgeon yesterday and got the details of my surgery. All I remember is hearing that my spinal fluid will leak and the doctor thinks he can fix it. But years from now, it could leak again and I would need to have more surgery. If he was trying to talk me out of it, he was successful. But I don't really have a choice. The tumor needs to come out so that I can start chemo and radiation. There are no other options if I want this cancer of my body.
So hence the title of the post. I woke up before my alarm with an overwhelming sadness. I woke up crying - I just couldn't stop. I got out of bed and went into the bathroom so I wouldn't wake up Chris. Never have I felt so sorry for myself - I'm a 31 year old mother. We planned to try for another baby by next summer. This stupid tumor is messing up my plans for my life. I don't get a choice in the next year of my life. I try to remind myself that there are people who have it much worse. I've been told I can be cured. But it still sucks!
Even though my plans are being put on hold, life isn't going to stop for me. It keeps moving and I have to accept that my cancer is a speed bump in my life and I will get through this!
- Sarah
So this is my first try at this. I read a lot of food and lifestyle blogs, but this is different. This is the start of my journey with cancer.
It's been an insane few days. About 3 weeks ago, I had surgery to remove a polyp in the right side of my nose and to fix a deviated septum on the left. When I saw my doctor a week post-op, he told me it wasn't a polyp, but a very rare tumor called an olfactory neuroblastoma. Of course, I had gone to this visit expecting to just have my splint removed, so my husband Chris was in the waiting room keeping our 14 month old Christopher busy. I had to make follow up appointments before we had a moment of privacy. So I got to tell my husband in an elevator that I had cancer.
So fast forward to two days ago. We go to the major hospital 50 minutes from our house to meet with the multidisciplinary team. Of course, the nurse tells me that 7 people are coming in and then takes my blood pressure - so for the girl who consistently has perfect blood pressure, seeing 132/85 made me even more upset!
Having lived through the last week not knowing anything, it was somewhat of a relief when the team of doctors told me that they were recommending the following - surgery, chemo and radiation. And that I should expect that all of this will take 6 months. And my chances of having another baby after chemo is 70%. But I can have my eggs harvested so that we have a better chance of having another baby. My head was spinning. They needed the room for the next patient, so we had to move down the hall. We talked to the social worker and after about an hour, I had an appointment scheduled several hours later for a PET scan and several doctor's appointments over the next few days.
I met with the surgeon yesterday and got the details of my surgery. All I remember is hearing that my spinal fluid will leak and the doctor thinks he can fix it. But years from now, it could leak again and I would need to have more surgery. If he was trying to talk me out of it, he was successful. But I don't really have a choice. The tumor needs to come out so that I can start chemo and radiation. There are no other options if I want this cancer of my body.
So hence the title of the post. I woke up before my alarm with an overwhelming sadness. I woke up crying - I just couldn't stop. I got out of bed and went into the bathroom so I wouldn't wake up Chris. Never have I felt so sorry for myself - I'm a 31 year old mother. We planned to try for another baby by next summer. This stupid tumor is messing up my plans for my life. I don't get a choice in the next year of my life. I try to remind myself that there are people who have it much worse. I've been told I can be cured. But it still sucks!
Even though my plans are being put on hold, life isn't going to stop for me. It keeps moving and I have to accept that my cancer is a speed bump in my life and I will get through this!
- Sarah
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