The other day, when I wrote, I had so much on my mind about my risks for ovarian cancer. I had the appointment with the gynecologic oncologist the day before as well as a blood test and had just scheduled the ultrasound, which is tomorrow morning.
Yes, I'm still nervous, but not as much as I was on Thursday morning when I wrote.
I have always believed in signs. I'm not a religious person, but I am still spiritual. I believe in an afterlife. I still talk out loud to family members who have passed and so many times I have felt their presence around me. When I want answers, I have asked for help and other times have asked for signs.
One example of that happened many years ago. I was going through a rough time. One of those where it seems like everything is going wrong all at once. I remember sitting on my sofa in my tiny ground level apartment, with my kittens sleeping next to me. I was upset and crying. I remember I just kept saying over and over and over, "Oh my God, what am I going to do? Oh my God, what am I going to do?"
All of a sudden there was a loud bang. My cats woke up and jumped right off the sofa. It scared the crap out of me! It sounded like someone on the front apartment building stairs had thrown a stick or rock or something on top of my built in air conditioner unit. I got off the sofa, walked over to my sliding glass door and looked outside towards the AC unit.
Sitting on top of the AC were two gray doves.
I looked up at the sky and said, "Okay, heard it. Everything is going to be okay. Thank you. Got it."
How's that for a message? Asking "Oh my God, what am I going to do?" and stopping when two doves pound down on my AC unit in response.
Another example of that happened shortly after my grandfather passed away. He had been in the hospital for about month and died before my grandmother had to make any decisions while he was in ICU. Like the stubborn Irishman he was, no one was going to tell him what to do, even down to choosing when he was going to go.
The day of his funeral, we all met at the funeral home. The family walked together across the street to the church for his funeral mass. While I was crossing the street with my cousin next to me, dressed in a kilt was a man playing "Amazing Grace" on a bagpipe. I remember walking across the street and in my head, telling my grandfather that I wanted to know that he was okay. I asked for some sort of sign from him to let me know, something that I would understand.
The following weekend I was out with a friend listening to an Alternative/Classic Rock cover band we loved at a bar in downtown Manchester, NH. Dancing and drinking the night away to songs like "Crazy Bitch", "You Shook Me All Night Long" and "Bodies", around midnight, the band stopped mid set.
The police axillary was there. They had guys in kilts playing Irish Music with women dressed and doing Irish Step Dancing. After two of those Irish songs, they stopped. Then the bagpipes started playing "Amazing Grace". At a bar in downtown Manchester, NH after midnight on a Saturday night, in the middle of the set for an Alternative/Classic Rock cover band.
I had tears streaming down my face. I knew that was my grandfather. Yup, it was a sign I completely understood.
Well, on Wednesday night, after I got home from my appointment with the gynecologic oncologist, my head was spinning. Having a prophylactic salpingo-oophorectomy shows cancer 5% of the time? I had a 5-10% chance of being BRCA +. My mammograms were clear. My lymph nodes had a low risk of involvement. I AM MURPHY! I was trying so hard to not freak out.
That night, I was still upset. Jim fell right to sleep. I was laying in bed for hours.
That was when I started talking to my grandmother. I thought my cousin Louise, who was 38 when she was diagnosed. I was scared. And I did not want to wait possibly a week to hear anything, after having my ultrasound then getting those results. I couldn't do it.
I wanted a sign.
So I asked my grandmother and then Louise to give me a sign. I wanted a sign to let me know that I was cancer free and did not have any stage of ovarian cancer and that I would not have to go through chemo a second time for a second cancer.
When I was little, Louise owned a hair salon. I remember so many times going to her with my long hair and holding strands of hair while she put beautiful French braids down my head. I have no idea how many times she braided my hair, but it was a lot!
SO that is what I asked for. "Louise, I need a sign that I am okay. If I am okay and cancer free and won't need chemo, I know what I want for a sign. A funky French braid that I will notice. And that will tell me that I am okay."
Thursday morning, I was home and that's when I last wrote. I had an appointment for a massage at Dana Farber at 11am which was amazing and luckily I was able to put my thoughts and fear of ovarian cancer and the possibility of more chemo out of my mind.
That afternoon I went to visit a friend and to see her new house. We were both hungry so we went to a take out place to order lunch and bring it back to her house. We sat in the seats at the front window, chatting away, while we were waiting for our lunch. The order counter was right in front of where I was sitting.
Then this girl walked in to do the same thing as us.... order food to go. The girl had this weird top on that I didn't like. That's what first got my attention when she walked in. Then she headed over to the counter to order and I was looking to see the back of this shirt that I didn't like. And then I noticed her hair.
She had this sort of half French braid in, that ended in this funky bun. It was cool.
My sign! Thank you Louise. I'm going to be okay. I'm cancer free, my ovaries will be okay and I won't need to go through chemo again. I got my sign.
Sunday, August 4, 2013
Thursday, August 1, 2013
I'm DONE!!
July was rough for me. I was still trying to recover from the fatigue from chemo when the fatigue from radiation started in. Just showing, getting ready and going for radiation every single day was exhausting. Someone said it to me really well, everything is an effort. SO true.
When the heat wave hit for the third time this summer with 5+ days over 90 degrees, so many people started to say that all they wanted to do was lay down. The heat was too much and they had no energy for anything. Well, that has been my life for months. That's the closest I can explain how I feel every single day, but to an even stronger degree. Sometimes even the thought of getting off the sofa to shower is too much for me.
Last Thursday, July 25th, was my last day of active treatment!! YAY!! I finished!! I had one of the radiation techs grab a picture of me on the table when I finished my last treatment.
On the far left side, that big giant gray thing... that's where the radiation came from. They described it like a giant mixer. That top part spins around me to move to the different areas that I was having radiated.
I would lay on that table, take my arms out of the johnny and my arms were up over my head and resting in what is covered by the sheet. They would move me around on that table to get me lined up for radiation to be in the EXACT places it needed to be.
Now? Pretty burned. I got a prescription to help with the discomfort. One good thing from being so uncomfortable... I was supposed to be wearing a bra 24/7 per my plastic surgeon. Both her and my radiation oncologist told me NO bra at all. My skin needs to heal up from the damage that was done during radiation. That's been kind of nice. Not that the boobs go anywhere with these expanders and all anyway.
Funny thing about that. The expanders are TIGHT. They are under the muscles on my chest and sometimes when I move, I can feel the muscles tighten even more. Its almost like something is pulling on my chest. Well, now and again, I forget that I'm not wearing a bra anymore. I get uncomfortable from the expanders and try to adjust the bra strap that isn't there. Oh yeah! I'm not wearing a bra! Nothing there to adjust, just those fun expanders for another 6 months.
BUT, the day after radiation finished, I was back at my plastic surgeon's office. She filled leftie back up to pre-radiation levels. I'm hoping when I go back in a month she'll give leftie another little boost up. Still not even but at least I no longer need to put an old cut up padded bra inside my bra on leftie's side to even the girls out. Literally, 150cc's difference between the two. Leftie was a B cup and Rightie is a D! That's a bit of a difference!
The burns.... not fun. It started on my back first. I was thinking something was in the back of my seat in my car because it hit me just the right way, right where the radiation was exiting my body. It sort of felt like I was bruised on my back. Then I realized it was the radiation.
After that, it was on the side of my body, under my arm first. That's why I had to stop wearing a bra. It was rubbing against my skin and making things worse. Another itchy area is on my clavicle bone on my right side. Because there are lymph nodes there, I got some radiation there too. That is where is it the brightest red now.
It is amazing at how precise they are with the radiation. I have an exact straight line of where it was on my body. Perfectly straight across my chest. They told me that forever, that area of my skin will be more sensitive to the sun. I'll get darker there, more than on the rest of my chest. Wonderful.
NOT easy to get a picture of the burns, trying to keep my scars covered and not have my face in the picture! WOW, that took some time (plus trying to keep the new rolls out of the picture too!). But this is what I have to share.... a picture of the square burns plus the small one on my clavicle bone.
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Like I said, VERY precise! Perfect straight lines.
Right now the spot that is the most sore is right under my boob. Its like a bad sunburn with the skin about to flake off. I keep putting on the creams a few times a day and it is helping a little... good thing.
Otherwise.... just trying to recover. I'm doing what my body needs to heal. Still sleeping ALL the time. I went out with a friend the other night, just a few hours and nothing crazy (we did Paint Nite) and I was in bed by 10:15. I woke up at 10:15am! Knocked me out! So I still have to take it easy.
I'm hoping that next week I will have a little more energy to start exercising again. Poor Rocco is dying for me to start walking him again. I miss it too, but I just don't have the energy for it most days.
The day I finished radiation, I was out with my friend Melissa that afternoon. We had fun hanging out and I REALLY appreciate how she is on top of getting a date for when we are getting together again. I was good at that once upon a time.
The next day was at the plastic surgeon for the recovery of leftie. Jim came with me and we hit a very early movie on Friday night, Red 2. I really liked it. I liked Red too though. Saturday morning we were up early and headed down to Foxboro for training camp. HOLY COW was it mobbed. Not like when we went 2 years ago. Hard to see and we only stayed for under 45 minutes. Then we walked around Patriots Place for a while. Jim got me a new Pat's T-shirt at the Pro Shop too. He was so sweet about my celebration weekend. :)
He cooked a late lunch and dinner that day for me at home. Sunday morning we were just relaxing at home most of the day and were back at the movies that night (Wolverine II, he's a fan, I saw it for him. Neither of us loved it. We could have waited for iTunes to see it).
The beginning of this week was quiet. Chiro on Monday morning for my back issues that started up again (not easy for him to do an adjustment when he can't really push down on my back. Bad enough I have towels rolled up over and under my boobs so they hang and aren't squished on the table!) Tuesday I used a massage gift certificate and it felt amazing! That night was Paint Nite with Jen and it was SO much fun. Here's a picture of our final products.
I have it hanging up in the living room already and I can't wait to go back to another one. SO much fun!!
Yesterday, Wednesday, was the stressful day of the week. Another new doctor, more tests and within a year, another surgery. Most of that I knew. Monday I go back for an ultrasound for more testing and hopefully all will be good to go. I already have my appointments booked for followup in January with her and for another ultrasound. And at that point I can schedule the surgery I'll need, in addition to the swap out expanders for implants surgery.
But that's all on the expectation that all is good with yesterdays tests and Monday's ultrasound.
Last night when I was worried and stressed about it, Jim said he wanted to say that everything would be okay, but when does, its not.
I had to remind him, I'm Murphy. As in Murphy's Law. If it CAN happen, it will. Murphy's Law. I'm Murphy.
I found a lump. Probably nothing, but lets do a mammogram and ultrasound. Ultrasound found something. Biopsy will probably be fine, most are nothing. Not nothing, was cancer.
Putting an IUD in is just an office procedure, no big deal. I needed an ultrasound to see if they perforated my uterus because of the pain I was in. Turns out, my uterus is curved and the IUD doesn't curve. Found that out on the second one they tried to put in.
Then surgery. Not expecting any lymph nodes. Nope. Not me. Tested positive, so needed them removed. What about lymphodema? VERY low risk, I shouldn't need a sleeve. Hmmm... already started swelling at times and will need to wear not only a sleeve, but a glove when I exercise.
Not sure what else to include, cuz there are SO many things that I could mention. If it COULD, it WILL. My wrist surgery last September... VERY rare for tendons to react to metal the way mine did. No surprise to me!
I like to say I'm unique. Truth is... HA HA! Unique? Okay!
So yeah, small chance that anything is wrong with the testing yesterday and ultrasound on Monday, but a chance. And with me? I'm expecting the worst. Absolute worst case, its more cancer, I have surgery asap and could need to do another 6 rounds of chemo (this one every 3 weeks instead so for 18 weeks). WONDERFUL!
My fingers are crossed but how can I not be nervous about it? For months this has been on my mind. I'm BRCA positive. I have ovarian cancer in my family and she was my age when she was diagnosed, which, surprise surprise... is unusual to have it that young. The general population has a 1.7% risk of ovarian. I have a 27% risk. Increase that because I've already had breast cancer. JOY!
By having my ovaries and fallopian tubes out, I lower my risk back to the general population (still considered ovarian cancer for the lining in that area, and that's possible even without ovaries.)
My NEW oncologist said I can get the tests done now, and again in 6 months. If I decide I want the surgery sooner, 4-6 weeks to schedule it. But, she said, "You WILL have the surgery." The risk is way too high and the testing is way too crappy (testing for ovarian misses cancer 75% of the time... ovarian is called the silent killer.)
They highly recommend surgery before the age of 40. I will be 39 a month from next Friday. So yeah, within the next year, I NEED to have another 2 surgeries, most likely both between January and April of next year, unless there are issues with the tests now for ovarian.
SO that's where I'm at.
Hopefully my energy will continue to increase and I will be writing again more often.
When the heat wave hit for the third time this summer with 5+ days over 90 degrees, so many people started to say that all they wanted to do was lay down. The heat was too much and they had no energy for anything. Well, that has been my life for months. That's the closest I can explain how I feel every single day, but to an even stronger degree. Sometimes even the thought of getting off the sofa to shower is too much for me.
Last Thursday, July 25th, was my last day of active treatment!! YAY!! I finished!! I had one of the radiation techs grab a picture of me on the table when I finished my last treatment.
I would lay on that table, take my arms out of the johnny and my arms were up over my head and resting in what is covered by the sheet. They would move me around on that table to get me lined up for radiation to be in the EXACT places it needed to be.
Now? Pretty burned. I got a prescription to help with the discomfort. One good thing from being so uncomfortable... I was supposed to be wearing a bra 24/7 per my plastic surgeon. Both her and my radiation oncologist told me NO bra at all. My skin needs to heal up from the damage that was done during radiation. That's been kind of nice. Not that the boobs go anywhere with these expanders and all anyway.
Funny thing about that. The expanders are TIGHT. They are under the muscles on my chest and sometimes when I move, I can feel the muscles tighten even more. Its almost like something is pulling on my chest. Well, now and again, I forget that I'm not wearing a bra anymore. I get uncomfortable from the expanders and try to adjust the bra strap that isn't there. Oh yeah! I'm not wearing a bra! Nothing there to adjust, just those fun expanders for another 6 months.
BUT, the day after radiation finished, I was back at my plastic surgeon's office. She filled leftie back up to pre-radiation levels. I'm hoping when I go back in a month she'll give leftie another little boost up. Still not even but at least I no longer need to put an old cut up padded bra inside my bra on leftie's side to even the girls out. Literally, 150cc's difference between the two. Leftie was a B cup and Rightie is a D! That's a bit of a difference!
The burns.... not fun. It started on my back first. I was thinking something was in the back of my seat in my car because it hit me just the right way, right where the radiation was exiting my body. It sort of felt like I was bruised on my back. Then I realized it was the radiation.
After that, it was on the side of my body, under my arm first. That's why I had to stop wearing a bra. It was rubbing against my skin and making things worse. Another itchy area is on my clavicle bone on my right side. Because there are lymph nodes there, I got some radiation there too. That is where is it the brightest red now.
It is amazing at how precise they are with the radiation. I have an exact straight line of where it was on my body. Perfectly straight across my chest. They told me that forever, that area of my skin will be more sensitive to the sun. I'll get darker there, more than on the rest of my chest. Wonderful.
NOT easy to get a picture of the burns, trying to keep my scars covered and not have my face in the picture! WOW, that took some time (plus trying to keep the new rolls out of the picture too!). But this is what I have to share.... a picture of the square burns plus the small one on my clavicle bone.
.JPG)
Right now the spot that is the most sore is right under my boob. Its like a bad sunburn with the skin about to flake off. I keep putting on the creams a few times a day and it is helping a little... good thing.
Otherwise.... just trying to recover. I'm doing what my body needs to heal. Still sleeping ALL the time. I went out with a friend the other night, just a few hours and nothing crazy (we did Paint Nite) and I was in bed by 10:15. I woke up at 10:15am! Knocked me out! So I still have to take it easy.
I'm hoping that next week I will have a little more energy to start exercising again. Poor Rocco is dying for me to start walking him again. I miss it too, but I just don't have the energy for it most days.
The day I finished radiation, I was out with my friend Melissa that afternoon. We had fun hanging out and I REALLY appreciate how she is on top of getting a date for when we are getting together again. I was good at that once upon a time.
The next day was at the plastic surgeon for the recovery of leftie. Jim came with me and we hit a very early movie on Friday night, Red 2. I really liked it. I liked Red too though. Saturday morning we were up early and headed down to Foxboro for training camp. HOLY COW was it mobbed. Not like when we went 2 years ago. Hard to see and we only stayed for under 45 minutes. Then we walked around Patriots Place for a while. Jim got me a new Pat's T-shirt at the Pro Shop too. He was so sweet about my celebration weekend. :)
He cooked a late lunch and dinner that day for me at home. Sunday morning we were just relaxing at home most of the day and were back at the movies that night (Wolverine II, he's a fan, I saw it for him. Neither of us loved it. We could have waited for iTunes to see it).
The beginning of this week was quiet. Chiro on Monday morning for my back issues that started up again (not easy for him to do an adjustment when he can't really push down on my back. Bad enough I have towels rolled up over and under my boobs so they hang and aren't squished on the table!) Tuesday I used a massage gift certificate and it felt amazing! That night was Paint Nite with Jen and it was SO much fun. Here's a picture of our final products.
Yesterday, Wednesday, was the stressful day of the week. Another new doctor, more tests and within a year, another surgery. Most of that I knew. Monday I go back for an ultrasound for more testing and hopefully all will be good to go. I already have my appointments booked for followup in January with her and for another ultrasound. And at that point I can schedule the surgery I'll need, in addition to the swap out expanders for implants surgery.
But that's all on the expectation that all is good with yesterdays tests and Monday's ultrasound.
Last night when I was worried and stressed about it, Jim said he wanted to say that everything would be okay, but when does, its not.
I had to remind him, I'm Murphy. As in Murphy's Law. If it CAN happen, it will. Murphy's Law. I'm Murphy.
I found a lump. Probably nothing, but lets do a mammogram and ultrasound. Ultrasound found something. Biopsy will probably be fine, most are nothing. Not nothing, was cancer.
Putting an IUD in is just an office procedure, no big deal. I needed an ultrasound to see if they perforated my uterus because of the pain I was in. Turns out, my uterus is curved and the IUD doesn't curve. Found that out on the second one they tried to put in.
Then surgery. Not expecting any lymph nodes. Nope. Not me. Tested positive, so needed them removed. What about lymphodema? VERY low risk, I shouldn't need a sleeve. Hmmm... already started swelling at times and will need to wear not only a sleeve, but a glove when I exercise.
Not sure what else to include, cuz there are SO many things that I could mention. If it COULD, it WILL. My wrist surgery last September... VERY rare for tendons to react to metal the way mine did. No surprise to me!
I like to say I'm unique. Truth is... HA HA! Unique? Okay!
So yeah, small chance that anything is wrong with the testing yesterday and ultrasound on Monday, but a chance. And with me? I'm expecting the worst. Absolute worst case, its more cancer, I have surgery asap and could need to do another 6 rounds of chemo (this one every 3 weeks instead so for 18 weeks). WONDERFUL!
My fingers are crossed but how can I not be nervous about it? For months this has been on my mind. I'm BRCA positive. I have ovarian cancer in my family and she was my age when she was diagnosed, which, surprise surprise... is unusual to have it that young. The general population has a 1.7% risk of ovarian. I have a 27% risk. Increase that because I've already had breast cancer. JOY!
By having my ovaries and fallopian tubes out, I lower my risk back to the general population (still considered ovarian cancer for the lining in that area, and that's possible even without ovaries.)
My NEW oncologist said I can get the tests done now, and again in 6 months. If I decide I want the surgery sooner, 4-6 weeks to schedule it. But, she said, "You WILL have the surgery." The risk is way too high and the testing is way too crappy (testing for ovarian misses cancer 75% of the time... ovarian is called the silent killer.)
They highly recommend surgery before the age of 40. I will be 39 a month from next Friday. So yeah, within the next year, I NEED to have another 2 surgeries, most likely both between January and April of next year, unless there are issues with the tests now for ovarian.
SO that's where I'm at.
Hopefully my energy will continue to increase and I will be writing again more often.
Friday, July 5, 2013
Happy 5th
Since I missed yesterday (plus many more days!), Happy 5th!
I have always love the 4th of July. When I was a kid, my entire extended family would all get together for a huge cookout, then they would set off crazy fireworks (and then the police would show up).
At this point, I'm still with family, but a much smaller group. My parents, brother and his girlfriend and my boyfriend. My parents rent a place at the beach we always went to when I was little... where my grandparents rented before that. Hard to not be in the sun this year, but I'm away, so I guess that's all that matters.
Last night after sunset, we headed past the few houses between us and the beach. It was high tide, so everything was up close this year. There were so many people on the beach! Near us, I think there were about 5 or 6 different groups setting off fireworks and really good ones too. The weather was perfect on the beach, with such a great breeze. People were cheering and clapping after each good grouping. It was just really nice.
Overall this week has been good. I had a few meltdowns, but much less than I had expected. Driving the 70 miles each way to get radiation treatments four days wasn't fun at all. Today I was up at 5am, out the door just after 6, in the Dunkin drive-thru then on the highway at 6:20. We got there around 7:25.
After my treatment, we stopped for gas then went home to feed and check on the cats, who are doing great. Then back on the road. We were down here just after 9:30 this morning. That's a long couple of hours! And I did that 4 times this week.
Last Friday morning I got an oil change. I looked at my mileage when we were at the gas station, which is just around the corner from where I got the oil change done. In 7 days I put 860 miles exactly on my car! WOW! And that was before getting home and driving back down here. It takes me over 4 months to drive 3000 miles. In the past week I almost did 1000!
Today when we got back, I took a nap for an hour or so. It was nice yesterday, when I didn't have radiation, and I could sleep until 9am. I missed that. I felt SO much better yesterday getting sleep. Wednesday I was a cranky bitch! 3 days in a row of being up at 5am, doing that back and forth ride, not sleeping well at night and not being able to take any naps with people coming in and out of the cottage slamming the door the whole time. It hit me hard by Wednesday (that was the day of 2 of the meltdowns. BIG meltdowns.)
Jim is hanging out watching a movie on his laptop. I woke up about an hour ago and I've been clearing out emails. I haven't really spent much time online this week... almost no facebook for me and I have no life! That's all I seem to do.
Wednesday afternoon we were at the beach for about 2 hours. I applied spf 50 to my body and 100+ to my face and head about 20 minutes before we went to the beach. I sat under an umbrella, faced away from the sun, reapplied my sunscreen and STILL ended up with some color on my chest. Jim put sunscreen on, spf 50, but never reapplied and sat facing the sun. Two days later, his chest is still pink. Poor guy. But he hasn't been complaining about it at all.
My hair is growing back much faster than I had expected. I'm glad I buzzed off the peach fuzz and now it is all growing in evenly. Of course my eyebrows are falling out more and more each day. That just seems like a cruel joke! Just as the hair on my head is growing, I lose my eyebrows and look worse. But I have gotten better at penciling them in. Jim said he wouldn't even be able to tell (and can only tell when I show him with only one eye done) When we compare them, one penciled and one not, the difference is crazy! Maybe I'll remember to snap a picture at some point to share... hair growing, one eyebrow done, one not. LOL! What a look!
This week has been hard in some ways through. Staying with my parents and brother... all the old issues come up. Toss in cancer and fatigue and me still being an emotional mess. I'm actually surprised I haven't had more meltdowns this week. I think that is because of Jim. He's just good at calming me down and helping me when I get to that point where I'm just done.
It is hard thinking about the future. I don't know what's next. I don't know who will be in my life when this is done. What will I be like when this is done? And will it ever really be done? I don't think so. It will always be in my life. It will always be part of me going forward. Every little thing that happens, is it related to my treatments? Or is it something new? But still a part of a cancer thing?
Just having this week to look back isn't easy. I was here over forth of July last year. This wasn't my life then. I was running and exercising ALL the time. I had my long hair pulled back under a hat. I was thin and had energy. I felt like I had so many friends. So much has changed in a year.
The thing I hate the most is the uncertainty about life in general... everything. All my questions... the what's next and who and all that. I'm unsure about everything. I don't know what my life will look like in 3 months, forget about having a 5 year plan!
I'm so insecure about everything, fearful about so many things. I am better at facing my fears with physical things.... Stand Up Paddle Boarding, Trapeze School, things like that. Physically, sure, throw my body into whatever and I'll figure it out and manage or not manage, but try my best.
But with the emotional side of things? Nope! I have such a hard time facing the unknown and facing my fears and forging ahead when it comes to that. I talk myself out of it, let the fears take hold and swirl in spirals in my head, round and round, growing and growing with each spin.
Will Jim and I survive this? Will him and I still be together come fall when I am done with treatment? Or am I only still living with him because I am still going through cancer treatments and he's too nice to do something like that?
What about friends? I am SO grateful for the friends who have been there for me, and who have stuck by me during this. I know it hasn't been easy and I know that I've been all over the place (try living with it, but not being able to change it at the time! Even WORSE!)
The "old" friends who I have reconnected with, what will happen when my drama is over and I'm done with treatments and my life goes on? How will that impact those friendships? And the friends who never left or the ones that got stronger this year? Will they stay like this?
What about the people who drifted off? Who I don't see or hear from much or ever anymore? Will they come back around after this? Will I want them to? How would I react to see or hear from people who aren't there now?
And working out? I haven't done that in months! Will I have the strength to do that again? Will I want to do that again? Will I lose this weight and not feel like a fat slob? How long will it take to feel like I look even just okay again? Instead of feeling like I look like a bald fat scarred freak? Will I ever have self confidence or self esteem again?
2013 has been tough and we are only half way through it. What is the rest of the year going to be like? Will I ever stop being afraid? Will I ever have trust in life, people or anything again?
This week I've been in my head more than usual. I'm tired all the time and frustrated that it is too much to even take a walk down the beach. I have been thinking about what I might want my life to look like in the future and I just don't know anymore. And that's what scares me the most. I am even afraid to think about what my future looks like. I don't know if I am going to like what I see.
I have always love the 4th of July. When I was a kid, my entire extended family would all get together for a huge cookout, then they would set off crazy fireworks (and then the police would show up).
At this point, I'm still with family, but a much smaller group. My parents, brother and his girlfriend and my boyfriend. My parents rent a place at the beach we always went to when I was little... where my grandparents rented before that. Hard to not be in the sun this year, but I'm away, so I guess that's all that matters.
Last night after sunset, we headed past the few houses between us and the beach. It was high tide, so everything was up close this year. There were so many people on the beach! Near us, I think there were about 5 or 6 different groups setting off fireworks and really good ones too. The weather was perfect on the beach, with such a great breeze. People were cheering and clapping after each good grouping. It was just really nice.
Overall this week has been good. I had a few meltdowns, but much less than I had expected. Driving the 70 miles each way to get radiation treatments four days wasn't fun at all. Today I was up at 5am, out the door just after 6, in the Dunkin drive-thru then on the highway at 6:20. We got there around 7:25.
After my treatment, we stopped for gas then went home to feed and check on the cats, who are doing great. Then back on the road. We were down here just after 9:30 this morning. That's a long couple of hours! And I did that 4 times this week.
Last Friday morning I got an oil change. I looked at my mileage when we were at the gas station, which is just around the corner from where I got the oil change done. In 7 days I put 860 miles exactly on my car! WOW! And that was before getting home and driving back down here. It takes me over 4 months to drive 3000 miles. In the past week I almost did 1000!
Today when we got back, I took a nap for an hour or so. It was nice yesterday, when I didn't have radiation, and I could sleep until 9am. I missed that. I felt SO much better yesterday getting sleep. Wednesday I was a cranky bitch! 3 days in a row of being up at 5am, doing that back and forth ride, not sleeping well at night and not being able to take any naps with people coming in and out of the cottage slamming the door the whole time. It hit me hard by Wednesday (that was the day of 2 of the meltdowns. BIG meltdowns.)
Jim is hanging out watching a movie on his laptop. I woke up about an hour ago and I've been clearing out emails. I haven't really spent much time online this week... almost no facebook for me and I have no life! That's all I seem to do.
Wednesday afternoon we were at the beach for about 2 hours. I applied spf 50 to my body and 100+ to my face and head about 20 minutes before we went to the beach. I sat under an umbrella, faced away from the sun, reapplied my sunscreen and STILL ended up with some color on my chest. Jim put sunscreen on, spf 50, but never reapplied and sat facing the sun. Two days later, his chest is still pink. Poor guy. But he hasn't been complaining about it at all.
My hair is growing back much faster than I had expected. I'm glad I buzzed off the peach fuzz and now it is all growing in evenly. Of course my eyebrows are falling out more and more each day. That just seems like a cruel joke! Just as the hair on my head is growing, I lose my eyebrows and look worse. But I have gotten better at penciling them in. Jim said he wouldn't even be able to tell (and can only tell when I show him with only one eye done) When we compare them, one penciled and one not, the difference is crazy! Maybe I'll remember to snap a picture at some point to share... hair growing, one eyebrow done, one not. LOL! What a look!
This week has been hard in some ways through. Staying with my parents and brother... all the old issues come up. Toss in cancer and fatigue and me still being an emotional mess. I'm actually surprised I haven't had more meltdowns this week. I think that is because of Jim. He's just good at calming me down and helping me when I get to that point where I'm just done.
It is hard thinking about the future. I don't know what's next. I don't know who will be in my life when this is done. What will I be like when this is done? And will it ever really be done? I don't think so. It will always be in my life. It will always be part of me going forward. Every little thing that happens, is it related to my treatments? Or is it something new? But still a part of a cancer thing?
Just having this week to look back isn't easy. I was here over forth of July last year. This wasn't my life then. I was running and exercising ALL the time. I had my long hair pulled back under a hat. I was thin and had energy. I felt like I had so many friends. So much has changed in a year.
The thing I hate the most is the uncertainty about life in general... everything. All my questions... the what's next and who and all that. I'm unsure about everything. I don't know what my life will look like in 3 months, forget about having a 5 year plan!
I'm so insecure about everything, fearful about so many things. I am better at facing my fears with physical things.... Stand Up Paddle Boarding, Trapeze School, things like that. Physically, sure, throw my body into whatever and I'll figure it out and manage or not manage, but try my best.
But with the emotional side of things? Nope! I have such a hard time facing the unknown and facing my fears and forging ahead when it comes to that. I talk myself out of it, let the fears take hold and swirl in spirals in my head, round and round, growing and growing with each spin.
Will Jim and I survive this? Will him and I still be together come fall when I am done with treatment? Or am I only still living with him because I am still going through cancer treatments and he's too nice to do something like that?
What about friends? I am SO grateful for the friends who have been there for me, and who have stuck by me during this. I know it hasn't been easy and I know that I've been all over the place (try living with it, but not being able to change it at the time! Even WORSE!)
The "old" friends who I have reconnected with, what will happen when my drama is over and I'm done with treatments and my life goes on? How will that impact those friendships? And the friends who never left or the ones that got stronger this year? Will they stay like this?
What about the people who drifted off? Who I don't see or hear from much or ever anymore? Will they come back around after this? Will I want them to? How would I react to see or hear from people who aren't there now?
And working out? I haven't done that in months! Will I have the strength to do that again? Will I want to do that again? Will I lose this weight and not feel like a fat slob? How long will it take to feel like I look even just okay again? Instead of feeling like I look like a bald fat scarred freak? Will I ever have self confidence or self esteem again?
2013 has been tough and we are only half way through it. What is the rest of the year going to be like? Will I ever stop being afraid? Will I ever have trust in life, people or anything again?
This week I've been in my head more than usual. I'm tired all the time and frustrated that it is too much to even take a walk down the beach. I have been thinking about what I might want my life to look like in the future and I just don't know anymore. And that's what scares me the most. I am even afraid to think about what my future looks like. I don't know if I am going to like what I see.
Tuesday, June 25, 2013
Fatigue
Yes, it has been a since I have last written. The fatigue I have been experiencing has been so overwhelming. The only reason I am writing now is because my new Kindle that Jim won has Swype typing on it. Right now I am laying in bed. It it's almost 11:30am.
Radiation started a week ago yesterday Even before that I has realized that being out for 2-3 hours, a couple if days in a row is too much for me. I would get home and nap. Now I do that every day. After sleeping 11 hours Sunday night, I had radiation yesterday then met with my friend Lauren, the photographer,to do more pictures. I was out of the house, door to door, for under 5 hours. I came home and took a two hour nap! I was exhausted and all I did was sit around.
I haven't had the energy to do much of anything lately. That has been so frustrating. I haven't exercised, haven't taken Rocco for a walk, haven't really done much of anything in weeks. I miss having energy for anything, for life. That has been really hard on me.
Even more recently, during chemo but before the fatigue was THIS bad, I have had friends say things about how I plan different things for us and if it wasn't for me planning, then things wouldn't happen. Now I am sleeping too much to plan anything. That sucks.
I am so grateful for my friend Debbie from work. She plans when we meet for lunch every week or two. Hound isn't the right word, but she makes sure it happens.
My friend Melissa is the same way. We typically get together every 2-3 weeks purely because of her persistence in planning. I appreciate it so much. I always have a great time when we get together. It wouldn't happen if it wasn't for Melissa.
Other than Jim and doctors, I see Debbie and Melissa more than anyone else. I don't have the energy to plan anymore. I know people are busy, but it's hard feeling left out if things I was once a part of or seeing things friends do from Facebook, that I am no longer included in.
I felt for a while that there were some friendships I have been chasing down. I don't have the energy or desire to chase anyone anymore. My phone number hasn't changed. My email hasn't changed. My address hasn't changed. If anyone wanted to connect or connect with me, that person would know how.
There have been people I have thought about, friends who I would love to see again or talk to, but it has gotten depressing when the only contact is as response, nothing more. The more fatigued I am, the harder it is for me to reach out. This is when I need the contact more and more, but I have gotten it less and less.
Sometimes I think about running away. Once I'm done with treatment, just running away, starting completely over. Making fresh start and a new life somewhere new with new people and new everything.
I'm tired of being tired. This level of fatigue isn't something more sleep or rest will fix. This is chemo fatigue that can and most likely last another few months or even longer. This is my life now.
I am so so grateful for everyone who has been there for me. More than words can say. I guess it's sad that the loss of people in my life, especially from those who I thought would be here the most, is something very common. All the cancer forums I am on, that's a common theme, the MIA friends and lost friendships.
I guess some people just handle cancer. Some people can't handle the emotional roller coaster cancer brings. Some people are "good times" friends but don't want in when the going gets too tough. Some people might think it's too much work or effort to to someone who right now has so little to give back. Some people might not be strong enough to deal with the reality that she could be the next one with cancer.
I don't know the reasons for the MIA friends. I just know how grateful that I am for the friends who have stuck around and who have put in the effort.
There are no words to express how much you, your support, your effort, persistence, and your friendship mean to me.
Thank you.
Radiation started a week ago yesterday Even before that I has realized that being out for 2-3 hours, a couple if days in a row is too much for me. I would get home and nap. Now I do that every day. After sleeping 11 hours Sunday night, I had radiation yesterday then met with my friend Lauren, the photographer,to do more pictures. I was out of the house, door to door, for under 5 hours. I came home and took a two hour nap! I was exhausted and all I did was sit around.
I haven't had the energy to do much of anything lately. That has been so frustrating. I haven't exercised, haven't taken Rocco for a walk, haven't really done much of anything in weeks. I miss having energy for anything, for life. That has been really hard on me.
Even more recently, during chemo but before the fatigue was THIS bad, I have had friends say things about how I plan different things for us and if it wasn't for me planning, then things wouldn't happen. Now I am sleeping too much to plan anything. That sucks.
I am so grateful for my friend Debbie from work. She plans when we meet for lunch every week or two. Hound isn't the right word, but she makes sure it happens.
My friend Melissa is the same way. We typically get together every 2-3 weeks purely because of her persistence in planning. I appreciate it so much. I always have a great time when we get together. It wouldn't happen if it wasn't for Melissa.
Other than Jim and doctors, I see Debbie and Melissa more than anyone else. I don't have the energy to plan anymore. I know people are busy, but it's hard feeling left out if things I was once a part of or seeing things friends do from Facebook, that I am no longer included in.
I felt for a while that there were some friendships I have been chasing down. I don't have the energy or desire to chase anyone anymore. My phone number hasn't changed. My email hasn't changed. My address hasn't changed. If anyone wanted to connect or connect with me, that person would know how.
There have been people I have thought about, friends who I would love to see again or talk to, but it has gotten depressing when the only contact is as response, nothing more. The more fatigued I am, the harder it is for me to reach out. This is when I need the contact more and more, but I have gotten it less and less.
Sometimes I think about running away. Once I'm done with treatment, just running away, starting completely over. Making fresh start and a new life somewhere new with new people and new everything.
I'm tired of being tired. This level of fatigue isn't something more sleep or rest will fix. This is chemo fatigue that can and most likely last another few months or even longer. This is my life now.
I am so so grateful for everyone who has been there for me. More than words can say. I guess it's sad that the loss of people in my life, especially from those who I thought would be here the most, is something very common. All the cancer forums I am on, that's a common theme, the MIA friends and lost friendships.
I guess some people just handle cancer. Some people can't handle the emotional roller coaster cancer brings. Some people are "good times" friends but don't want in when the going gets too tough. Some people might think it's too much work or effort to to someone who right now has so little to give back. Some people might not be strong enough to deal with the reality that she could be the next one with cancer.
I don't know the reasons for the MIA friends. I just know how grateful that I am for the friends who have stuck around and who have put in the effort.
There are no words to express how much you, your support, your effort, persistence, and your friendship mean to me.
Thank you.
Thursday, June 6, 2013
The End is in Sight (but another beginning?)
This week has been better than the meltdown I had on Saturday. I'm still trying to adjust to my new normal, even with treatment starting up again soon. It can be overwhelming at times thinking about it all and processing it all.
Monday I had my appointment with the radiation oncologist. She is so down to earth and I really like her. It was still a bit challenging for me to get through the day. Jim met me for the appointment and was there while I met with the doctor to go over everything. She reviewed the risks and side effects of radiation with me and how it will work.
After meeting with her, I went in for another scan. They needed to line me up to the machine and see how things will need to be lined up for all of the 28 treatments. Margo who walked me through it all was great, almost TOO chipper even. Think Katie Couric kind of chipper. But I guess that's a good thing. Her job is getting people who have cancer set up for radiation. So yeah, it fits.
I didn't know how the scan would go and once I was on the table laying down, I couldn't tell what the scan machine was like. She had me go back and forth real quick so I could see out the other side. Not like an MRI so that was okay, but it still got my anxiety up a little.
After the scans, which Margo did try to help me with any anxiety, she had to tattoo me. :( I haven't been looking forward to that part. But they are smaller than I had expected. Four little dots that really do look like freckles. When I showed Jim that night, he said he would have just thought they were freckles if I didn't tell him. The thing is though, I know that they aren't freckles and they will be on my body forever now, unless I get them removed.
My radiation oncologist wanted me to have 50-70cc's of saline removed from my left breast to not cause any skin damage to that side as the radiation is projected over from my left to right. On Tuesday I had my appointment with my plastic surgeon for the final adjustments before radiation begins.
After going through radiation, I will have skin damage and burns. My skin will no longer stretch if any size adjustments need to be made before I swap my expanders out for implants. All the size changes need to be done now, before radiation. And per my radiation oncologist, NO changes are allowed at this point forward until radiation is done.
At my last appointment a month ago, my plastic surgeon put in 60 cc's on my right side only. I was already uncomfortable being lopsided then. Now? After seeing her on Tuesday? She wanted to make sure my right side was good to go and stretched, so she added another 40 cc's to that side. BUT per my radiation oncologist, she had to remove (aka "deflate") my left side by 50-70cc's. She took out 50 on my left.
Now, my left is 150 cc's smaller than my right. It is a HUGE difference! It is going to be hard to adjust to. I am going to have to figure something out for when I'm wearing a bathing suit! :( Not happy with that. I was already insecure enough without now having VERY lopsided boobs.
After my appointment with the plastic surgeon on Tuesday, I headed back to see Margo and have one more scan. They needed to make sure the changes the plastic surgeon made will have me lined up and good to go when radiation starts. As far as I know, things are good. At least I haven't gotten any calls yet telling me otherwise.
A week from Friday, on the 14th, I head back to radiation. They will do a final set up and have me in the machine for a bit, getting me lined up and all that. They will set the radiation machine to be ready for my treatments. The treatments start on Monday, June 17th.
Before I left on Monday, they printed out my schedule for me. I have every single treatment printed out. Almost all of them are at 1pm. A couple are at 12:45. Then the week I am on vacation down the cape (still need radiation!) Monday, Tuesday and Wednesday my appointments are at 7:45. Thursday they are closed. Friday my appointment is at 7:30. I'll have to leave the Cape, give myself about 90 minutes to get there, where I will be for about 20 minutes or so, then another under 90 minutes to get back to the Cape. But doing that, I should be back at the cottage each day around 9:30am.
It kind of works out a little bit too. I'll need someone to feed the cats for me while I'm gone. If I'm coming home almost every morning, that is 4 other times I won't need anyone to feed them for me. I will just need someone to feed them every night, Sunday-Saturday, then on Thursday and Saturday mornings. I don't know yet who I can ask to do that for me, someone local. I have to ask Jim about it too, before I give a house key out. But then, by stopping at the house to feed them those 4 mornings, I will have to give myself another 45 minutes when I leave the Cape to get to the house, feed them, then the 15-20 minute drive back to Dana Farber.
Jim has needed my car yesterday and today, so I haven't been able to go anywhere. I did get out and take Rocco for a walk yesterday and I'm hoping I have the energy to do it again today.
I still have so much on mind about finishing treatment, where I go from here with my career and any other changes I want to make with my life. Also, I need to think about what I want to do for preventative measures for ovarian cancer as well. I need to start looking up all of that and that scares me.
Next week I am going to an event in Boston with BrightPink.org. It is about women under 40 who are at high risk for breast and ovarian cancers. I started thinking about the BRCA-2 mutation that I have. I can't say for sure what part of my family it came from, but it is somewhere on my dad's side, since my mom was negative for it.
Then I started thinking about the cancer family tree I had to do when I was tested for the BRCA gene. Although none of my dad's cousin's have tested positive for the BRCA mutation, I am fairly positive it came from my grandmother's side.
A cousin who was tested for the gene over 10 years ago (tested negative), did this tree, which is what I used. It goes back 3 generations, which is what I was supposed to do, but 3 generations for her was 4 for me. So my great-great-grandmother, Rose, who died of breast cancer. She was married 3 times, my great-great-grandfather was the third, and my great grandmother was one of her last children. With all of the children she had from each husband she had 11 kids. Two of her daughters had breast cancer. From Rose's grandchildren (outside of my great-grandmother side), she had a grandson with cancer and 3 granddaughters with breast cancer. One was in her 50's, another was 38 when she died. My age. Rose's 3rd husband, my great-great-grandfather, also died of bowel cancer.
Then it's to my great-grandmother, Lucy, who I remember well. My Nana Lucy! I was her oldest great-grandchild, her #1. :) Her husband, Paul, my great-grandfather, had cancer as well, stomach or bowel cancer. They had 7 kids, including my grandmother, Mary. One I'm not sure of, I can't even remember her name. She left the family long before I was born. I don't know if my dad ever met her.
So, with my grandmother and her 5 other brother's and sister's, Paul was killed when he was young, at 9 years old. One of her sisters had breast cancer and 2 of her daughters had breast cancer in their late 40's (although one tested negative for the gene). One brother had bladder cancer. Another brother died of prostate cancer at 47. His daughter died of ovarian cancer at 40. That's 2 years older than me.
My cousin Louise was 2 years older than me. Two! When she died of ovarian cancer, what they call "the silent killer". My the time there are symptoms, it can be too late. She died when she was 2 years older than me.
I remember going to visit Louise when she was sick. I remember going upstairs to her bedroom and visiting with her as she was laying in bed and so tired. I remember he funeral mass as well. I was 14 years old. When we walked into the funeral home, I was sobbing. Her sisters were comforting me. Even at 14, I remember feeling bad about that. They lost a sister and they were comforting me.
I remember that Louise knew it was coming. She made ALL the plans for her funeral, from the music and readings that were done at mass, to the location and food served after the mass. That was Louise, making it easier on everyone else.
During her funeral mass, there is one thing I remember so clearly in the church. I remember looking around and seeing a mailman at the mass, in his uniform. I don't know if he was her mailman or a friend or what, but in my 14 year old mind, I remember thinking, "she was such a great person, even her mailman came to her funeral."
Louise was 2 years older that me when she died. This one thought has been in my head for weeks. I know I need to do something. I want to schedule an appointment with a gynecological oncologist and get the ball rolling on that for my options. I'm scared about it. I don't want to have to go through any cancer again. And if I do nothing, I probably will have to. Next time I might not be so lucky.
So the end is in sight for me with my breast cancer treatment. July 25th is my last day of treatment! YAY! Almost there. Oh one thing I forgot, I have an appointment with my plastic surgeon on July 26th, so she can add more saline to my left side the day after I'm done with radiation so I can be more even as soon as possible!
I'm looking forward to being done with this part soon. I'm hoping the fatigue starts to subside soon (still at 10-12 hours a day of sleep not to mention the HOURS I don't move on the sofa). The side effects have been difficult to manage and its discouraging to not see any changes right now.
But I'll have another beginning with what I do about my ovaries to minimize as much as possible the chance for ovarian cancer. I never want to have to go through this again, so whatever I can do to make that happen, I'll have to do.
Monday I had my appointment with the radiation oncologist. She is so down to earth and I really like her. It was still a bit challenging for me to get through the day. Jim met me for the appointment and was there while I met with the doctor to go over everything. She reviewed the risks and side effects of radiation with me and how it will work.
After meeting with her, I went in for another scan. They needed to line me up to the machine and see how things will need to be lined up for all of the 28 treatments. Margo who walked me through it all was great, almost TOO chipper even. Think Katie Couric kind of chipper. But I guess that's a good thing. Her job is getting people who have cancer set up for radiation. So yeah, it fits.
I didn't know how the scan would go and once I was on the table laying down, I couldn't tell what the scan machine was like. She had me go back and forth real quick so I could see out the other side. Not like an MRI so that was okay, but it still got my anxiety up a little.
After the scans, which Margo did try to help me with any anxiety, she had to tattoo me. :( I haven't been looking forward to that part. But they are smaller than I had expected. Four little dots that really do look like freckles. When I showed Jim that night, he said he would have just thought they were freckles if I didn't tell him. The thing is though, I know that they aren't freckles and they will be on my body forever now, unless I get them removed.
My radiation oncologist wanted me to have 50-70cc's of saline removed from my left breast to not cause any skin damage to that side as the radiation is projected over from my left to right. On Tuesday I had my appointment with my plastic surgeon for the final adjustments before radiation begins.
After going through radiation, I will have skin damage and burns. My skin will no longer stretch if any size adjustments need to be made before I swap my expanders out for implants. All the size changes need to be done now, before radiation. And per my radiation oncologist, NO changes are allowed at this point forward until radiation is done.
At my last appointment a month ago, my plastic surgeon put in 60 cc's on my right side only. I was already uncomfortable being lopsided then. Now? After seeing her on Tuesday? She wanted to make sure my right side was good to go and stretched, so she added another 40 cc's to that side. BUT per my radiation oncologist, she had to remove (aka "deflate") my left side by 50-70cc's. She took out 50 on my left.
Now, my left is 150 cc's smaller than my right. It is a HUGE difference! It is going to be hard to adjust to. I am going to have to figure something out for when I'm wearing a bathing suit! :( Not happy with that. I was already insecure enough without now having VERY lopsided boobs.
After my appointment with the plastic surgeon on Tuesday, I headed back to see Margo and have one more scan. They needed to make sure the changes the plastic surgeon made will have me lined up and good to go when radiation starts. As far as I know, things are good. At least I haven't gotten any calls yet telling me otherwise.
A week from Friday, on the 14th, I head back to radiation. They will do a final set up and have me in the machine for a bit, getting me lined up and all that. They will set the radiation machine to be ready for my treatments. The treatments start on Monday, June 17th.
Before I left on Monday, they printed out my schedule for me. I have every single treatment printed out. Almost all of them are at 1pm. A couple are at 12:45. Then the week I am on vacation down the cape (still need radiation!) Monday, Tuesday and Wednesday my appointments are at 7:45. Thursday they are closed. Friday my appointment is at 7:30. I'll have to leave the Cape, give myself about 90 minutes to get there, where I will be for about 20 minutes or so, then another under 90 minutes to get back to the Cape. But doing that, I should be back at the cottage each day around 9:30am.
It kind of works out a little bit too. I'll need someone to feed the cats for me while I'm gone. If I'm coming home almost every morning, that is 4 other times I won't need anyone to feed them for me. I will just need someone to feed them every night, Sunday-Saturday, then on Thursday and Saturday mornings. I don't know yet who I can ask to do that for me, someone local. I have to ask Jim about it too, before I give a house key out. But then, by stopping at the house to feed them those 4 mornings, I will have to give myself another 45 minutes when I leave the Cape to get to the house, feed them, then the 15-20 minute drive back to Dana Farber.
Jim has needed my car yesterday and today, so I haven't been able to go anywhere. I did get out and take Rocco for a walk yesterday and I'm hoping I have the energy to do it again today.
I still have so much on mind about finishing treatment, where I go from here with my career and any other changes I want to make with my life. Also, I need to think about what I want to do for preventative measures for ovarian cancer as well. I need to start looking up all of that and that scares me.
Next week I am going to an event in Boston with BrightPink.org. It is about women under 40 who are at high risk for breast and ovarian cancers. I started thinking about the BRCA-2 mutation that I have. I can't say for sure what part of my family it came from, but it is somewhere on my dad's side, since my mom was negative for it.
Then I started thinking about the cancer family tree I had to do when I was tested for the BRCA gene. Although none of my dad's cousin's have tested positive for the BRCA mutation, I am fairly positive it came from my grandmother's side.
A cousin who was tested for the gene over 10 years ago (tested negative), did this tree, which is what I used. It goes back 3 generations, which is what I was supposed to do, but 3 generations for her was 4 for me. So my great-great-grandmother, Rose, who died of breast cancer. She was married 3 times, my great-great-grandfather was the third, and my great grandmother was one of her last children. With all of the children she had from each husband she had 11 kids. Two of her daughters had breast cancer. From Rose's grandchildren (outside of my great-grandmother side), she had a grandson with cancer and 3 granddaughters with breast cancer. One was in her 50's, another was 38 when she died. My age. Rose's 3rd husband, my great-great-grandfather, also died of bowel cancer.
Then it's to my great-grandmother, Lucy, who I remember well. My Nana Lucy! I was her oldest great-grandchild, her #1. :) Her husband, Paul, my great-grandfather, had cancer as well, stomach or bowel cancer. They had 7 kids, including my grandmother, Mary. One I'm not sure of, I can't even remember her name. She left the family long before I was born. I don't know if my dad ever met her.
So, with my grandmother and her 5 other brother's and sister's, Paul was killed when he was young, at 9 years old. One of her sisters had breast cancer and 2 of her daughters had breast cancer in their late 40's (although one tested negative for the gene). One brother had bladder cancer. Another brother died of prostate cancer at 47. His daughter died of ovarian cancer at 40. That's 2 years older than me.
My cousin Louise was 2 years older than me. Two! When she died of ovarian cancer, what they call "the silent killer". My the time there are symptoms, it can be too late. She died when she was 2 years older than me.
I remember going to visit Louise when she was sick. I remember going upstairs to her bedroom and visiting with her as she was laying in bed and so tired. I remember he funeral mass as well. I was 14 years old. When we walked into the funeral home, I was sobbing. Her sisters were comforting me. Even at 14, I remember feeling bad about that. They lost a sister and they were comforting me.
I remember that Louise knew it was coming. She made ALL the plans for her funeral, from the music and readings that were done at mass, to the location and food served after the mass. That was Louise, making it easier on everyone else.
During her funeral mass, there is one thing I remember so clearly in the church. I remember looking around and seeing a mailman at the mass, in his uniform. I don't know if he was her mailman or a friend or what, but in my 14 year old mind, I remember thinking, "she was such a great person, even her mailman came to her funeral."
Louise was 2 years older that me when she died. This one thought has been in my head for weeks. I know I need to do something. I want to schedule an appointment with a gynecological oncologist and get the ball rolling on that for my options. I'm scared about it. I don't want to have to go through any cancer again. And if I do nothing, I probably will have to. Next time I might not be so lucky.
So the end is in sight for me with my breast cancer treatment. July 25th is my last day of treatment! YAY! Almost there. Oh one thing I forgot, I have an appointment with my plastic surgeon on July 26th, so she can add more saline to my left side the day after I'm done with radiation so I can be more even as soon as possible!
I'm looking forward to being done with this part soon. I'm hoping the fatigue starts to subside soon (still at 10-12 hours a day of sleep not to mention the HOURS I don't move on the sofa). The side effects have been difficult to manage and its discouraging to not see any changes right now.
But I'll have another beginning with what I do about my ovaries to minimize as much as possible the chance for ovarian cancer. I never want to have to go through this again, so whatever I can do to make that happen, I'll have to do.
Sunday, June 2, 2013
More of a Ride
Even now, even after finishing chemo, I am still on a roller coaster ride. It isn't good days or bad days. Its more about good moments and not so good moments. Yesterday afternoon and last night, not so good.
I just started getting down about things again. And once that spiral starts, it can be really hard to stop it. The thing I hate the most is what this whole thing has done to my self esteem and confidence. SHATTERED it. I am still dealing with the fatigue and haven't lost a pound. I still have a hard time looking in the mirror. I don't like what I see looking back at me.
Being up 20 pounds is so hard. I feel like a fat slob. Toss in being bald and then the 3-4 inch scars across my nipple-less chest. I feel like a freak. I don't like to look at me so how can I expect anyone else to be okay with it. How can Jim? NOT a good road for me to go down.
When Jim left the house yesterday afternoon to pick up some parts for the car he was working on, I had myself a crazy ass pity party that paused for a bit but started up with fully gusto when I tried to go to sleep. SOBBING a few times yesterday. Sobbing.
Jim has been incredible. But this sucks for him. If I can't look at myself in the mirror, how can he possibly be attracted to me? How can he want this? I know he loves me, but sometimes I wonder if he would have been happier and better off if I never moved in and put this on him. Then I feel selfish for putting him through all of this. Because I loved him and wanted this relationship, I moved in with him, but that wasn't fair to him. And I doubt that decision all the time.
I don't want to lose him and I am so happy he is in my life. He is my best friend. I have never been more ME with anyone than I am with him. I'm just an honest, true ME, no holding anything back at all. He is such a great person and I would do anything for him. Even let him go. And I think about it too much. Will we make it through this? Through the rest of my treatment? Will we be okay when radiation is over?
He thinks things will just go back to what they were before October 29th, that I will be back to me before October 29th. That's can't happen. I change. Going through breast cancer, surgery, chemo, all of this... it changed me. And because it changed ME, it changed us and our relationship. Just like I have a new normal, we have a new relationship. And sometimes I wonder if this what he wants. I hate doubting our relationship because of my own insecurities.
Today is National Survivors Day. I'm one of them now, a survivor. A cancer survivor.
Today I took a Stand Up Paddleboarding lesson with a couple of great friends, Christine and Jen. It was so much fun, even though the wind was strong and water was choppy. But I had a blast. Okay so I am absolutely EXHAUSTED but I had a good time. The sun was shining, not a cloud in the sky. Even in the high 80's, the breeze was so nice I never got too hot. It was a great time.
After we stopped for lunch, I headed home and showered. Then I hung out and relaxed for a while. Jim and I went to the late afternoon movie where the have the best reclining seats. It feels like your at home on the sofa, kicking back! We had a nice time and it was fun to hang out and spend time with Jim.
SO, for National Survivors Day, I had a great time. I was out LIVING my life and I spent it with people I love and who I'm so happy that they are in my life.
Today was a good day. I think the highs much more than down times.
I just started getting down about things again. And once that spiral starts, it can be really hard to stop it. The thing I hate the most is what this whole thing has done to my self esteem and confidence. SHATTERED it. I am still dealing with the fatigue and haven't lost a pound. I still have a hard time looking in the mirror. I don't like what I see looking back at me.
Being up 20 pounds is so hard. I feel like a fat slob. Toss in being bald and then the 3-4 inch scars across my nipple-less chest. I feel like a freak. I don't like to look at me so how can I expect anyone else to be okay with it. How can Jim? NOT a good road for me to go down.
When Jim left the house yesterday afternoon to pick up some parts for the car he was working on, I had myself a crazy ass pity party that paused for a bit but started up with fully gusto when I tried to go to sleep. SOBBING a few times yesterday. Sobbing.
Jim has been incredible. But this sucks for him. If I can't look at myself in the mirror, how can he possibly be attracted to me? How can he want this? I know he loves me, but sometimes I wonder if he would have been happier and better off if I never moved in and put this on him. Then I feel selfish for putting him through all of this. Because I loved him and wanted this relationship, I moved in with him, but that wasn't fair to him. And I doubt that decision all the time.
I don't want to lose him and I am so happy he is in my life. He is my best friend. I have never been more ME with anyone than I am with him. I'm just an honest, true ME, no holding anything back at all. He is such a great person and I would do anything for him. Even let him go. And I think about it too much. Will we make it through this? Through the rest of my treatment? Will we be okay when radiation is over?
He thinks things will just go back to what they were before October 29th, that I will be back to me before October 29th. That's can't happen. I change. Going through breast cancer, surgery, chemo, all of this... it changed me. And because it changed ME, it changed us and our relationship. Just like I have a new normal, we have a new relationship. And sometimes I wonder if this what he wants. I hate doubting our relationship because of my own insecurities.
Today is National Survivors Day. I'm one of them now, a survivor. A cancer survivor.
Today I took a Stand Up Paddleboarding lesson with a couple of great friends, Christine and Jen. It was so much fun, even though the wind was strong and water was choppy. But I had a blast. Okay so I am absolutely EXHAUSTED but I had a good time. The sun was shining, not a cloud in the sky. Even in the high 80's, the breeze was so nice I never got too hot. It was a great time.
After we stopped for lunch, I headed home and showered. Then I hung out and relaxed for a while. Jim and I went to the late afternoon movie where the have the best reclining seats. It feels like your at home on the sofa, kicking back! We had a nice time and it was fun to hang out and spend time with Jim.
SO, for National Survivors Day, I had a great time. I was out LIVING my life and I spent it with people I love and who I'm so happy that they are in my life.
Today was a good day. I think the highs much more than down times.
Saturday, June 1, 2013
A Dog? Or a Person?
Today is off to a lazy start. I made myself some french toast for breakfast (which Jim doesn't like) while he was out food shopping. And after 11am, that's about it. I have some laundry going that I need to finish up and nothing much else planned for the day.
Right now I'm just hanging out with the AC's blasting while Jim is on his laptop standing at the kitchen island doing some work.
SO, I figured I could share some fun pictures of Rocco. He kills me! Sometimes I wonder if he wasn't a person in a past life or something. He really does act like a person!
Right now I'm just hanging out with the AC's blasting while Jim is on his laptop standing at the kitchen island doing some work.
SO, I figured I could share some fun pictures of Rocco. He kills me! Sometimes I wonder if he wasn't a person in a past life or something. He really does act like a person!
Okay, so this was in bed this morning and Jim put his head phones on Rocco. Its a little blurry, but doesn't he look like he's just rockin' out!
And I LOVE this one. Jim was adjusting the head phones and I happened to get the pic as Rocco was sticking out his tongue! Ha ha! I have the head phones! LOL!
And Rocco ended up on the sofa with me later this morning. He LOVES to watch TV. How comfy does he look with his head resting on the recliner?
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