I can't believe it has been almost 2 weeks since I posted last. Been busy!
The whole week after the hearing, I was SO busy. I was online, messaging people, getting the Facebook page going, and trying to get more and more support from everyone for House Bill 1050. I really think it is just so important.
Somehow it has all moved along. I've now been put in charge of the Facebook page. And that's not a problem for me. But I just have to make sure I stay on top of it to keep the reach going. Plus, I got my list of things I'm supposed to work on as well for the next few weeks.
I did pretty well for the few days after the hearing, energy-wise anyway. But by the weekend, I CRASHED! I drove up to my parents house last Saturday to drop something off and ended up taking a 2 hour nap while I was there! Crazy.
This whole week has been more of that. Not sure what is going on. I've been sleeping in, napping, and getting full nights of sleep each night. Tuesday night I got 8 hours of sleep and was up with Jim when he got up around 6:30am. I was back to sleep by 8am and slept until 1pm! Yeah, I was supposed to go into Boston for a meeting with the team that day. Didn't happen. I was out of it all afternoon too.
Thursday I slept in as well. My friend Jennifer (LOVE YOU!) came down as my chauffeur for the day. Nice little 90 minute drive each way to take me to one appointment! I'm lucky for her friendship. She's amazing. :)
BUT... Thursday wasn't easy. Jennifer took the ride for me while I had another test done. Another biopsy. This one is for cervical cancer. Joy.
The gynecologic oncologist wants to make sure she has everything done and ready for my surgery on Columbus Day. Although when she started the test, she didn't see any abnormal cells, she decided to do a biopsy anyway. If anything come back, she can do it all while I'm in surgery and already under anesthesia. Luckily, the biopsy wasn't as bad as I had expected. It wasn't as deep as they typically are (since she didn't see anything), so it wasn't as much tissue taken. I was still uncomfortable all night and into Friday, but not like it would have been for a typical biopsy.
After the biopsy, she went over everything for the surgery on Columbus Day... 16 days. WOW. Scary. And yes, I am scared. Another freakin surgery. General anesthesia. She said the incision will be in my belly button, but she will have 2 smaller incisions on one side and that is where the camera will be. The 2 smaller ones are 5mm, and the belly button one is 11mm. Okay, I can do this.
I'm doing my best to not freak out. I want to stay positive and not automatically go to the 5% chance that she'll find cancer when she does this surgery. In the case that she does, she'll need to do more biopsies in surrounding tissue as well as testing the lymph nodes. And whatever else could have cancer, she'll take that too.
IF there is cancer, IF it is aggressive (grade 3), even if it is didn't spread to anything (including not spread to lymph nodes), I would need chemo again. That is the one thing that keeps going over and over in my mind... just as my hair looks like I did this on purpose, just as I'm starting to feel a teeny tiny bit better about myself, I could need to start chemo again. Wonderful!
Not going there in my mind is not easy. I'm trying, but it isn't easy. Keeping busy has helped, plus its in a different month. Even though it is 2 weeks from Monday, my calendar is still on September, so nothing in October is high on my list. Not sure what I'll do next week on Tuesday when it flips, but I'll deal with that then.
What else?
Mostly same old same old. Mostly fatigue, where I'm sleeping 12 hours a day. Still have neuropathy too. Hoping that gets better soon.
Jim is amazing. He's been making a huge noticeable effort and has been a huge comfort to me as I stressed about this recent biopsy, waiting on the results and then the upcoming surgery. I really could not have gotten through all of this if I didn't have him in my life. I'm lucky for that.
So now moving on and moving ahead. Hoping for less fatigue. Hoping for less neuropathy. Hoping to have energy to exercise, to work out and to hopefully start to lose weight too!
Feeling like I have a purpose to put into the density bill has been really helpful. I've done well with that, when I have the energy to put into it.
I've come a very long way in the past few weeks, as far as my self esteem. I'm doing so much better than I was just one month ago. I'm positive that I can keep that going, especially as I get more energy and try to exercise more too.
Friends... I'm still just so lucky. I have great people. A HUGE thank you to all of you who have helped me so much. Now I'm just trying to pay it forward somehow.
Saturday, September 28, 2013
Tuesday, September 17, 2013
Up on Beacon Hill
Today was a long day. It was hearing day. I am completely and utterly exhausted right now from the commute in and out of Boston, so this is going to have to be short and mostly pasting.
Here is a picture of the group who is behind the bill.
This is what I posted on Facebook tonight, which includes my personal story.
I NEED YOUR HELP!!!
Even though this is long, please read my VERY personal information on how you can make a difference and literally help save lives. All women, your mothers, daughter, sisters, cousins, aunts, friends…. we all need your help.
Today I testified at the State House in front of the Health Care & Finance Committee for a hearing on a breast density bill. Before I was diagnosed with breast cancer, I had never heard of dense breast tissue & I was unaware of my risks. I don’t want any other woman to go through what I went through.
I thought I was doing everything right. But I didn’t know to ask about my breast density and it isn’t standard practice of care for radiologists to share that with women. So they don’t pass along this vital and life altering information.
House bill 1050 was drafted by Ellen Kelliher and her colleagues. Her husband Damian Musello testified today to give Ellen’s story. She had her annual mammograms and all were clear. She got her “happy-grams” after each. Ellen died on July 1st of this year from breast cancer at the age of 58. Damian testified today because Ellen is not here to share her story herself.
I am including the testimony I gave today, my story. No tears fell while I testified but I had to pause several times when I became choked up. It can still be hard to say, “I have breast cancer”, even now, close to 1 year from when I first found the lump.
PLEASE contact your state representatives and senators and URGE them to support House Bill 1050. Representative Denise Provost sponsored this bill. Please direct your representatives and senators to her office for any questions they may have.
Representative Provost’s aide, Pooja Phaltankar, advised that PERSONAL stories make the biggest impact. PLEASE use your own story or that of someone you love, or even my story. Tell your representatives and senators that this is what, you, your loved one or even me, YOUR FRIEND JULIE, went through and it isn’t right. The radiologists who are the experts with reading the mammogram should share the risks they are very aware of with the women who are trusting their LIVES to this one test.
We trust that by having a clear mammogram, we do not have cancer. That is NOT true. A clear mammogram only tells you that no cancer was seen on the mammogram. It doesn’t tell you what is NOT seen.
SO here is my personal story. Please share as little or as much as you would like with your representatives.
To find your representative or senator, please click on this link:
https://malegislature.gov/People
Thank you. On behalf of me, on behalf of the other women pushing for this bill, on behalf of Damion and Ellen, and on behalf of all the women this will impact. Thank you.
(testimony given on 9/17/13)
My name is Julie Orsillo and I am here to speak in support of House Bill 1050.
Many people do not remember the exact date Hurricane Sandy hit the northeast last year. I do. That is a day I will never be able to forget. That day, October 29th 2012, was the day I was told I had breast cancer.
At 35 years old, in May of 2011, I was sent for a baseline mammogram and ultrasound on my left breast after my gynecologist thought she felt something. My left side was fine, but the mammogram found micro-calcifications on my right. No ultrasound was done on my right breast, but due to the calcifications, they wanted to watch me for 2 years, with mammograms every 6 months to monitor me for any changes in the size or quantity of the calcifications. My next two mammograms, in December of 2011 and June of 2012 were both clear as well.
I didn't know anything about dense tissue. I was never advised anything regarding dense tissue, or risk factors. I was told that micro-calcifications could be normal.
Last Columbus Day weekend, while lying in bed, I found a lump in my right breast. That week I saw my gynecologist who sent me for another mammogram and ultrasound. That mammogram was clear, but the ultrasound was questionable. That was on October 19th; 10 days before Hurricane Sandy.
After my diagnosis, when I saw my gynecologist she kept asking, "What did I miss?" She was telling me that I had done everything right. I never missed an annual. I never missed the 6 month mammograms. I was a healthy BMI.
SHE didn't miss anything; the mammogram did.
A week after my diagnosis, I had a breast MRI. That showed additional areas as questionable.
I decided upon a bilateral mastectomy. During my surgery on January 10th of this year, it was discovered that I had 3 tumors in total and one lymph node also tested positive for cancer. Due to that, all lymph nodes were taken from that area.
I was lucky that I found the lump when I did. I had stage 2b breast cancer and grade 3- which is most aggressive. The largest of the 3 tumors was 2.5cm. Had I not found it when I did, it would have continued to grow and to spread. No signs of cancer appeared on my mammogram 10 days before my diagnosis on October 29th. My next mammogram was already scheduled for early December, less than 2 months later. It is fair to assume that cancer would not have shown up on that either. That would have allowed the cancer to continue to grow and spread for another 6 months, until I would have had another mammogram, in June of 2013.
I wish I had known I had dense breast tissue, that dense breast tissue is a risk factor for breast cancer, and that other diagnostic imaging available was 16 months prior to me finding a lump on my own when I had my baseline mammogram.
After my bilateral mastectomy in January, I have had 8 rounds of chemotherapy and 28 radiation treatments. My last day of work was on January 9th and I have been out of work on disability since. I have been dealing with neuropathy in my hands and feet as a result of chemotherapy and dealing with that has been so difficult. I have trouble walking in the morning. The weakness in my feet makes stairs difficult throughout the day and near impossible by evenings. I have had some lymphedema symptoms and swelling due to the lymph nodes being removed, which is why I need to wear a sleeve and gauntlet. If the cancer had been found earlier, it would not have spread to my lymph nodes.
This hair style isn’t a choice, it is courtesy of chemotherapy. This time last year, I had waist long, straight blonde hair that I loved. It was part of my identity. I needed to cut that off before chemotherapy started. I would not have been able to emotionally handle seeing it fall out piece by piece.
I ran the Boston Marathon in 2011. I was a running coach and taught fitness classes. I worked out 6 days a week between running, kickboxing, swimming, weight lifting and yoga.
Now I have two scars across my chest where my nipples used to be. I have lost full range of motion in my right shoulder. My hair is gone. I have gained 25 pounds with the steroids and other drugs during chemotherapy in addition to no longer having the energy to work out.
I don’t have children and with chemotherapy, I am infertile. If I ever choose to have a child, my only hope rests in 7 embryos currently frozen, which costs me close to $100 each month since insurance only covered 3 months of freezing.
If I had been aware of density issues and risks when I had my first baseline mammogram in June of 2011, 16 months prior to my diagnosis, I could have had a different surgery. I would not have had lymph nodes test positive for cancer. I may not have needed chemotherapy, or radiation. My medical insurance company would have been billed substantially less than the over $300,000 they were billed, for costs associated with my care and treatment since January 1st of this year alone.
I urge you to support House Bill 1050. This is essential for the health of women in this commonwealth. Allow women to receive information we need to make decisions for our health.
Here is a picture of the group who is behind the bill.
This is what I posted on Facebook tonight, which includes my personal story.
I NEED YOUR HELP!!!
Even though this is long, please read my VERY personal information on how you can make a difference and literally help save lives. All women, your mothers, daughter, sisters, cousins, aunts, friends…. we all need your help.
Today I testified at the State House in front of the Health Care & Finance Committee for a hearing on a breast density bill. Before I was diagnosed with breast cancer, I had never heard of dense breast tissue & I was unaware of my risks. I don’t want any other woman to go through what I went through.
I thought I was doing everything right. But I didn’t know to ask about my breast density and it isn’t standard practice of care for radiologists to share that with women. So they don’t pass along this vital and life altering information.
House bill 1050 was drafted by Ellen Kelliher and her colleagues. Her husband Damian Musello testified today to give Ellen’s story. She had her annual mammograms and all were clear. She got her “happy-grams” after each. Ellen died on July 1st of this year from breast cancer at the age of 58. Damian testified today because Ellen is not here to share her story herself.
I am including the testimony I gave today, my story. No tears fell while I testified but I had to pause several times when I became choked up. It can still be hard to say, “I have breast cancer”, even now, close to 1 year from when I first found the lump.
PLEASE contact your state representatives and senators and URGE them to support House Bill 1050. Representative Denise Provost sponsored this bill. Please direct your representatives and senators to her office for any questions they may have.
Representative Provost’s aide, Pooja Phaltankar, advised that PERSONAL stories make the biggest impact. PLEASE use your own story or that of someone you love, or even my story. Tell your representatives and senators that this is what, you, your loved one or even me, YOUR FRIEND JULIE, went through and it isn’t right. The radiologists who are the experts with reading the mammogram should share the risks they are very aware of with the women who are trusting their LIVES to this one test.
We trust that by having a clear mammogram, we do not have cancer. That is NOT true. A clear mammogram only tells you that no cancer was seen on the mammogram. It doesn’t tell you what is NOT seen.
SO here is my personal story. Please share as little or as much as you would like with your representatives.
To find your representative or senator, please click on this link:
https://malegislature.gov/People
Thank you. On behalf of me, on behalf of the other women pushing for this bill, on behalf of Damion and Ellen, and on behalf of all the women this will impact. Thank you.
(testimony given on 9/17/13)
My name is Julie Orsillo and I am here to speak in support of House Bill 1050.
Many people do not remember the exact date Hurricane Sandy hit the northeast last year. I do. That is a day I will never be able to forget. That day, October 29th 2012, was the day I was told I had breast cancer.
At 35 years old, in May of 2011, I was sent for a baseline mammogram and ultrasound on my left breast after my gynecologist thought she felt something. My left side was fine, but the mammogram found micro-calcifications on my right. No ultrasound was done on my right breast, but due to the calcifications, they wanted to watch me for 2 years, with mammograms every 6 months to monitor me for any changes in the size or quantity of the calcifications. My next two mammograms, in December of 2011 and June of 2012 were both clear as well.
I didn't know anything about dense tissue. I was never advised anything regarding dense tissue, or risk factors. I was told that micro-calcifications could be normal.
Last Columbus Day weekend, while lying in bed, I found a lump in my right breast. That week I saw my gynecologist who sent me for another mammogram and ultrasound. That mammogram was clear, but the ultrasound was questionable. That was on October 19th; 10 days before Hurricane Sandy.
After my diagnosis, when I saw my gynecologist she kept asking, "What did I miss?" She was telling me that I had done everything right. I never missed an annual. I never missed the 6 month mammograms. I was a healthy BMI.
SHE didn't miss anything; the mammogram did.
A week after my diagnosis, I had a breast MRI. That showed additional areas as questionable.
I decided upon a bilateral mastectomy. During my surgery on January 10th of this year, it was discovered that I had 3 tumors in total and one lymph node also tested positive for cancer. Due to that, all lymph nodes were taken from that area.
I was lucky that I found the lump when I did. I had stage 2b breast cancer and grade 3- which is most aggressive. The largest of the 3 tumors was 2.5cm. Had I not found it when I did, it would have continued to grow and to spread. No signs of cancer appeared on my mammogram 10 days before my diagnosis on October 29th. My next mammogram was already scheduled for early December, less than 2 months later. It is fair to assume that cancer would not have shown up on that either. That would have allowed the cancer to continue to grow and spread for another 6 months, until I would have had another mammogram, in June of 2013.
I wish I had known I had dense breast tissue, that dense breast tissue is a risk factor for breast cancer, and that other diagnostic imaging available was 16 months prior to me finding a lump on my own when I had my baseline mammogram.
After my bilateral mastectomy in January, I have had 8 rounds of chemotherapy and 28 radiation treatments. My last day of work was on January 9th and I have been out of work on disability since. I have been dealing with neuropathy in my hands and feet as a result of chemotherapy and dealing with that has been so difficult. I have trouble walking in the morning. The weakness in my feet makes stairs difficult throughout the day and near impossible by evenings. I have had some lymphedema symptoms and swelling due to the lymph nodes being removed, which is why I need to wear a sleeve and gauntlet. If the cancer had been found earlier, it would not have spread to my lymph nodes.
This hair style isn’t a choice, it is courtesy of chemotherapy. This time last year, I had waist long, straight blonde hair that I loved. It was part of my identity. I needed to cut that off before chemotherapy started. I would not have been able to emotionally handle seeing it fall out piece by piece.
I ran the Boston Marathon in 2011. I was a running coach and taught fitness classes. I worked out 6 days a week between running, kickboxing, swimming, weight lifting and yoga.
Now I have two scars across my chest where my nipples used to be. I have lost full range of motion in my right shoulder. My hair is gone. I have gained 25 pounds with the steroids and other drugs during chemotherapy in addition to no longer having the energy to work out.
I don’t have children and with chemotherapy, I am infertile. If I ever choose to have a child, my only hope rests in 7 embryos currently frozen, which costs me close to $100 each month since insurance only covered 3 months of freezing.
If I had been aware of density issues and risks when I had my first baseline mammogram in June of 2011, 16 months prior to my diagnosis, I could have had a different surgery. I would not have had lymph nodes test positive for cancer. I may not have needed chemotherapy, or radiation. My medical insurance company would have been billed substantially less than the over $300,000 they were billed, for costs associated with my care and treatment since January 1st of this year alone.
I urge you to support House Bill 1050. This is essential for the health of women in this commonwealth. Allow women to receive information we need to make decisions for our health.
Monday, September 16, 2013
Dense & more
I feel like a kid the night before the first day of school. I'm nervous! But I'm wired too. My dress is hung up, jewelry out, purse cleaned out and organized- including a notebook, pens, and Lara Bars. But I'm nervous.
Tomorrow I am testifying at a hearing in front of the Health Care & Finance Committee at the State House for a bill on breast density notification. I am giving my story, about my experience. I had 4 mammograms in 16 months which were all clear, including one 10 days before my diagnosis.
I have dense breast tissue, which shows up white on a mammogram. So does cancer. No one told me that dense tissue was a high risk. No one told me that it could mask cancer. No one told me I could have a clear mammogram and still have breast cancer. No one told me that there were other diagnostic imaging tests which would have been better able to detect cancer.
This bill is to educate women and provide them with information necessary to make informed decisions regarding their health. Its about breast density.
I'm nervous about testifying. I typed it out, read it at least 10 times, and continued to work on it. My testimony is supposed to be 3 minutes long. HA HA HA! I read it tonight for the shortest version and that was 4 1/2 minutes. Granted, reading it in my living room to the dog, sitting on the sofa in yoga pants, and reading it at the state house, at a committee hearing. I know I talk fast to begin with, but when I'm nervous it is SO much worse. My problem will be slowing it down enough to be understood!
Other than that?
The birthday week was fun. After my birthday dinner with Jim, I had dinner with my mom and the girls in her family on Tuesday... including 2 aunts and 2 cousins. Thursday night I had dinner with my friend Jen.
Friday I was exhausted after a physical with my PCP but I did make a stop at my office to say hi. I got the flu shot and I guess I was due for my tetanus shot which now has whooping cough added to it. It could have been the busy week or the 2 shots, I don't know which, but I was exhausted when I got home.
I think I was home Friday around 2:45. I know I was asleep by 3:30. Jim woke me up when he got home from work at 5 and again at 6 to see if I wanted to get dinner. He went out without me and I was back to sleep until he got home just before 8pm. And that night? I STILL slept another 9 hours! After a 4+ hour nap!
On Saturday we took Rocco to a dog park and he had a blast playing at the beach. Of course it was MUD at the water's edge, so he needed a bath as soon as we got home. He hates baths! But he is so clean now.
Sunday I was out with Jen again and we went to a tour of a chocolate factory. That was a BLAST. But again, I got home and slept for a while.
And up to today... I had a bone density test. And another nap this afternoon. But I did get my testimony done and ready tonight too.
Things with Jim and me seem to be going okay as of right now. But he can only take so much, and I'm a raging crazy bitch on Tamoxifen. INSANE! Who do you know who cries hysterically because she is crying?? ME!
Last night I walked downstairs to feed the cats. I forgot to put on a light until I got to the bottom of the stairs. Well, my feet are in so much pain at the end of the day and stairs suck. I started crying because I forgot the light and it hurt too much to go back up the stairs to turn on the light. Then I was crying more because I was crying. It just sucks.
I think am crying pretty much every single day at this point, and guess what? That is NORMAL! URGH! Normal? To cry over nothing?? Yup. Wonderful fucking Tamoxifen.
Tonight I was flipping out when I tried to have a protein shake. My hands hurt trying to shake the shaker while I was holding down the cover, but the cover wouldn't stay closed without being held. I started yelling and screaming about it. And then Jim took the shaker for me and did it.
Its something every single day. And it sucks.
Sometimes its hard when I think about my life a year ago. And that has been hitting me a bit more lately too. It was Columbus Day weekend when I found the lump. That anniversary is fast approaching.
It hit more tonight when I was writing up my testimony as well. I'm not who I was a year ago. She's gone. I'm no longer that same person. I can't go back and I can't be that person again. The innocence of not having cancer is gone. I'll never be that person again.
I'm a new me and working on the wonderful phrase, "a new normal", whatever the fuck that is. But its my life. And I'm still trying to figure it all out, who I am, what I want and where I'm going.
I miss things from my old life. I miss friends from my old life who seem to have dropped off the face of the earth. I still feel left out of things. Facebook can be hard when I see friends I had all together without me, especially from the people I don't hear from anymore, who tell me that they are busy with this or that. But not with other friends I guess... just with me.
It is hard to move on from that, from the hurt and disappointment in people. I've done my best to let go of the anger I had. I've even tried to reach out to a few people or respond to others. It sucks when I hear crickets back. Disappointing.
When others are SO encouraging and supportive, its almost like a slap in the face when the people I considered good friends have just disappeared. I try to remember that how people act is about them, who they are and what they are going through in their lives. It isn't about me. Its about them. But that doesn't make the hurt any easier to handle. Toss in mood swings and outburst and fucking Tamoxifen.... oh yeah, its a FUN fucking ride.
Well, now that its after 11pm and I have to get up early to be out the door around 7:30am... time for me to go to bed! Fingers crossed tomorrow goes well!!
Tomorrow I am testifying at a hearing in front of the Health Care & Finance Committee at the State House for a bill on breast density notification. I am giving my story, about my experience. I had 4 mammograms in 16 months which were all clear, including one 10 days before my diagnosis.
I have dense breast tissue, which shows up white on a mammogram. So does cancer. No one told me that dense tissue was a high risk. No one told me that it could mask cancer. No one told me I could have a clear mammogram and still have breast cancer. No one told me that there were other diagnostic imaging tests which would have been better able to detect cancer.
This bill is to educate women and provide them with information necessary to make informed decisions regarding their health. Its about breast density.
I'm nervous about testifying. I typed it out, read it at least 10 times, and continued to work on it. My testimony is supposed to be 3 minutes long. HA HA HA! I read it tonight for the shortest version and that was 4 1/2 minutes. Granted, reading it in my living room to the dog, sitting on the sofa in yoga pants, and reading it at the state house, at a committee hearing. I know I talk fast to begin with, but when I'm nervous it is SO much worse. My problem will be slowing it down enough to be understood!
Other than that?
The birthday week was fun. After my birthday dinner with Jim, I had dinner with my mom and the girls in her family on Tuesday... including 2 aunts and 2 cousins. Thursday night I had dinner with my friend Jen.
Friday I was exhausted after a physical with my PCP but I did make a stop at my office to say hi. I got the flu shot and I guess I was due for my tetanus shot which now has whooping cough added to it. It could have been the busy week or the 2 shots, I don't know which, but I was exhausted when I got home.
I think I was home Friday around 2:45. I know I was asleep by 3:30. Jim woke me up when he got home from work at 5 and again at 6 to see if I wanted to get dinner. He went out without me and I was back to sleep until he got home just before 8pm. And that night? I STILL slept another 9 hours! After a 4+ hour nap!
On Saturday we took Rocco to a dog park and he had a blast playing at the beach. Of course it was MUD at the water's edge, so he needed a bath as soon as we got home. He hates baths! But he is so clean now.
Sunday I was out with Jen again and we went to a tour of a chocolate factory. That was a BLAST. But again, I got home and slept for a while.
And up to today... I had a bone density test. And another nap this afternoon. But I did get my testimony done and ready tonight too.
Things with Jim and me seem to be going okay as of right now. But he can only take so much, and I'm a raging crazy bitch on Tamoxifen. INSANE! Who do you know who cries hysterically because she is crying?? ME!
Last night I walked downstairs to feed the cats. I forgot to put on a light until I got to the bottom of the stairs. Well, my feet are in so much pain at the end of the day and stairs suck. I started crying because I forgot the light and it hurt too much to go back up the stairs to turn on the light. Then I was crying more because I was crying. It just sucks.
I think am crying pretty much every single day at this point, and guess what? That is NORMAL! URGH! Normal? To cry over nothing?? Yup. Wonderful fucking Tamoxifen.
Tonight I was flipping out when I tried to have a protein shake. My hands hurt trying to shake the shaker while I was holding down the cover, but the cover wouldn't stay closed without being held. I started yelling and screaming about it. And then Jim took the shaker for me and did it.
Its something every single day. And it sucks.
Sometimes its hard when I think about my life a year ago. And that has been hitting me a bit more lately too. It was Columbus Day weekend when I found the lump. That anniversary is fast approaching.
It hit more tonight when I was writing up my testimony as well. I'm not who I was a year ago. She's gone. I'm no longer that same person. I can't go back and I can't be that person again. The innocence of not having cancer is gone. I'll never be that person again.
I'm a new me and working on the wonderful phrase, "a new normal", whatever the fuck that is. But its my life. And I'm still trying to figure it all out, who I am, what I want and where I'm going.
I miss things from my old life. I miss friends from my old life who seem to have dropped off the face of the earth. I still feel left out of things. Facebook can be hard when I see friends I had all together without me, especially from the people I don't hear from anymore, who tell me that they are busy with this or that. But not with other friends I guess... just with me.
It is hard to move on from that, from the hurt and disappointment in people. I've done my best to let go of the anger I had. I've even tried to reach out to a few people or respond to others. It sucks when I hear crickets back. Disappointing.
When others are SO encouraging and supportive, its almost like a slap in the face when the people I considered good friends have just disappeared. I try to remember that how people act is about them, who they are and what they are going through in their lives. It isn't about me. Its about them. But that doesn't make the hurt any easier to handle. Toss in mood swings and outburst and fucking Tamoxifen.... oh yeah, its a FUN fucking ride.
Well, now that its after 11pm and I have to get up early to be out the door around 7:30am... time for me to go to bed! Fingers crossed tomorrow goes well!!
Tuesday, September 10, 2013
New Beginnings
I wasn't really planning to write this morning, because I don't know how much time I have and my thoughts are still too random. But here goes!
Yesterday was my birthday. My 39th birthday. I have never been this happy to be another year older! 38 sucked and there is really no other way to say it. I had surgery on my wrist on September 27th last year. A week and a half later I found the lump and on October 29th I got the call. Year from hell.
But now, 38 is DONE! I closed the door on it and have moved on to 39. YAY!
Last night I did a journaling exercise I did years ago with a now retired life coach I worked with. Joan used this for New Year's but my birthday is the start of a new year for me. Plus, with my birthday being the same time of year that school starts up, it is full of newness for me. Here is the link to Joan's coaching page if anyone has interest in what I used to journal. http://www.joancollinscoach.com/cb1206.html
Since I started doing this MANY years ago, I have been naming my year. It gives the year a theme and intention. I don't think (or don't remember anyway) I did this for 2013. It was right before my surgery. I could have. I might have even written here about it! Gotta love chemo brain!
For my 39th birthday, I named my 39th year. This is the year of new beginnings. I'm cancer free and and done with active treatment. This is the start of a healthier life for me. Jim and I have had many issues, but we have decided to work on things and to give it another chance, all in for both of us. We are having a new beginning in our relationship as well.
I'm still trying to figure out what I want to be when I grow up, but I am looking into going back to school part time and finishing up my degree (depending on financial aide and all of the costs associated with it) and moving into the health and human services field. It is important for me to give back and help other women who are or will be where I was. I want to pass along when I have learned.
Within that, I want to use what I know as a fitness instructor, become a certified personal trainer, and also start other trainings. I want to become a certified yoga instructor, take nutrition classes and become a life coach as well. I think with the combination of all of that I will have so many tools available for a whole health perspective, along with my own personal experiences.
This past year I lost a lot. Not only my breasts with the bilateral mastectomy or my hair with chemo, but my self esteem and confidence as well. I lost my sense of adventure. I lost my fearlessness. I also lost a few friendships in the past year and others which were close, are no longer that close.
But, as I have heard so many others say, there are so many good things that somehow come along with a cancer diagnosis. And I would like to go through so many of those now.
1. I never knew how selfless and giving people could be. I have been unbelievable touched by the outpouring of support I have received from so many people over the past year. The entire island in our kitchen was covered with cards and flowers I have received. One of the flower arrangements I received came in a white basket. I put all the cards in that one basket but I can barely fit anymore in there now. They all mean so much to me and helped me get through SO much. Thank you all for that.
2. My friend Carol in Brazil. We "met" online on WhatNext, which is basically Facebook for cancer. An online social media site for people with cancer or caregivers. We both joined around the same time, shortly after were were diagnosed last fall. I had 2 rounds of IVF, then surgery in early January, followed by chemo and radiation. Carol started chemo before Christmas last year. She had a few months of that, then surgery, then more chemo, then radiation.
We just GOT what the other was going through. She understood my fears. She knew how hard it was to lose my hair. She knew the struggles with relationships, with depression, anxiety, fatigue. She just understood because she was going through it all as well.
Carol prepped me for my start of chemo and gave me so many tips and helpful hints. I passed along information to her about surgery and let her know things she could do to help. We sent each other care packages, Boston to Brazil.
Carol gave me strength and courage to forge on when I didn't have any of my own. We have never met in person, but she is an amazing friend who I will cherish forever. I cannot wait to meet her in person and we are already working on planning that within the next year. Meeting her is on my list of 40 things to do before I'm 40!
3. Reconnecting and re-establishing old friendships. Without my cancer diagnosis, I don't know if we would have reached out to each other to reconnect as we have, so for that, I am so grateful. The cards, texts, messages, visits, words or support and encouragement... it has all meant so much to me. To not have really spoke, other than a few Facebook messages here and there, in pretty much 7-10 years, these friends from my past have been so unbelievably amazing with the love and support they have provided me with. I treasure the moments and our friendships. Please know how much you and our friendships mean to me.
4. Meeting so many new people.
Everyone at Dana Farber would never have been in my life if it wasn't for breast cancer. They are wonderful people and I love the joy and happiness that they all bring. I have had so many laughs with the wonderful people I have come into contact with.
I won the Boudoir Photo Shoot in January pretty much because of my story. I met Lauren, the photographer, Stephanie the hair stylist, MaryJo the makeup artist and Tricia the stylist. I've happened to bump into MaryJo and Stephanie a few times and Lauren has been so kind to have done 2 additional photo sessions with me. Those photos showed me strength I didn't realize I had. The Boudoir Party was a wonderful night with great friends, days before my surgery.
Strangers in public. I have been out bald for months. It is amazing the conversations that can start! I've met so many other club members.... the cancer club or chemo club or breast cancer club. We all know the look and see something of ourselves in each other. We share tips and advice and pass along information or organizations that we found helpful ourselves. We support each other in a way that non-club members just can't.
5. I had purple hair! I never would have had the courage to have purple hair before! So after cutting it short and not loving the loss of my long hair, I dyed it purple. And LOVED it. I rocked the purple hair! So much so, that I'm actually considering going purple again. Who knows? Why not! It was so much fun. I loved it.
6. Friendships I had were strengthened. Some friends I've had for many many years, and other newer friendships, were strengthened this year. So many provided me with so much support and encouragement and conversation and distractions. I loved the breakfasts, lunches, sitting on the sofa with me and Rocco, getting out and doing something different (like a bike ride, brunch in Cambridge, Tomato Bash), going for walks, text message or email check ins, chemo visits, company at home, cards... ALL of it. WOW!
There are too many people who fall into this category to mention all of you, but I have to mention a few specifically.
My Boudoir Party girls.... each of you have been so wonderful to me this entire year. You have all had so much going on in your own lives.
Tracie, getting engaged, selling your condo & getting married (yes, all that in 2013!) plus other personal things, it was a busy year for you. You made so much time for me and even though you may really have visited just to see Rocco, your visits always made such a difference to me. Grabbing lunch, heading out somewhere like the beach or just hanging on the sofa and catching up, they were all so great. Thank you.
Christine... working INSANE hours, going to school at night, volunteering, then finding replacement roommates and moving! WOW! But every other Tuesday you popped by for a chemo visit with your little happy smiling face. Love you my bucket list friend! Thanks for SUP lesson, the Tomato Bash and the trampolines at SkyZone. I'm willing to try that indoor rock climbing place, surfing, or trying snowboarding again this winter (but the only other time I tried in 2008, I broke my wrist!) and I still want to do outdoor ice skating, so Frog Pond? I love your sense of adventure and confidence. Thank you for your friendship and joy.
Jennifer, in between a vacation, work trips, your engagement, working on your new house, and changing jobs, you were amazing to me! Specifically picking my last chemo treatment to be my chemo buddy so you could celebrate with me. I loved that! ALL of the cards that you sent me mean so much. And wow, did you do TOO much. The breakfast box, and OMG those brownies!! Hmm... I might need to order some for me now! :) The visits you have made, the emails, Paint Nite, SUP, yoga... just to name a few things! Thank you!
I know how lucky I am to have the 3 of you as friends in my life and you mean SO much to me.
Michelle, my friend who tries so hard to get me on the phone when I'm not really a phone person! I'm sorry we have hard a harder time connecting but thank you for not giving up on me. You have done so much for me! You were hear right after surgery (ready to kick the visiting nurse's ASS for having me in tears!). You took me the day after my first chemo for my first shot. You walked in your sneakers in the snow with me, so I could get outside and get a tiny bit of exercise, even though you wanted me tied down so I could rest. I love you. I know you have had a lot on your plate lately and I am sorry I haven't been as good a friend to you as you have been to me. I love you!
Melanie.... love you honey. Please never ever think you haven't done enough. OMG you have done too much. With 2 girls in elementary school, a son who just started college, moving, working full-time, a dog and don't forget your husband! You have SO much. I love the visits and having you and Aly coming down to see me and Rocco (I know it isn't all about me!) when you could. You have done way too much with gifts. It isn't necessary. I love you and our friendship for (WOW!) over 20 years. You are an amazing person and you give way too much of yourself. I love you!
Jennifer, thank you. Another one with a husband, dog, young daughter and who moved! Talk about a busy life! But you always made time. I loved every one of the cards you sent, especially the pickle birthday card in March. You have no idea how many people I have told about that card! You have been so kind to me and your friendship means more to me than I can express. The advice you have given me, all the times you have listened to me vent and you compassionately responded, even if you didn't agree with me. You are one of the blessings that cancer has brought back into my life.
Melissa, another blessing from the past. Thank you. I can be horrible about making plans, especially with the schedule of doctor appointments and fatigue tossed in. But you never gave up on me or getting together. You understood the few times I needed to cancel, even at the last minute. And you have been wonderful about scheduling more time to get together. You have listened to me vent about life and so many insane things that have happened this year and never let time pass with texts or messages. Thank you so much for bringing our friendship back into my life.
There are so many others as well... thank you all SO much for everything you have brought into my life. You haven't made me feel like I was sick or a cancer patient or a burden in anyway. You helped me feel alive and like ME and like the world has been okay, even with me being on pause for a while!
7. Family. My extended family with so many cousins... a guess a benefit of a big family. SO many of the cards in that white basket are from family checking in. Cousin Judy with your crazy text messages and "electronic tuck ins" at night, thank you! Just getting your little "XOXO" message with nothing else means more to me than you know, knowing that I wasn't forgotten is huge!
In addition to my family support is Jim's family. My last day of radiation, last day of active treatment overall, I not only got a congratulations call from Jim's mom, but from her sister as well! His cousin's sent cards and I always had so much support from them all. His cousin's wife even buzzed the back of my head and around my ears last week to clean up my hair. We were sitting around talking for close to 2 hours that day! When in a relationship with someone, you never know what you are going to get with their family. With Jim, I have received a whole new loving, caring, accepting and supportive family of my own. They have just brought me right into their circle and I feel so at home with them all. I'm very lucky to have them in my life and so touched about the support they have provided me with this year.
8. Jim. We have been on a roller coaster this year. We were away for my 38th birthday. A month later, he asked me to move in. That was the same weekend I found the lump. A few weeks later I was diagnosed with breast cancer.
After I got that call, I remember running to our bedroom and collapsing on the bed in tears. He held me there for hours. I told him I understood if he wanted to take it back, if he didn't want me to move in with him, if he wanted to break up. I couldn't walk away from cancer, he could. He hadn't signed up for that. I will never forget his answer.
"I'm not walking away from my best friend."
Jim has shown me what true love really is. He unpacked my mail order meds for me. He came to almost every doctor appointment I have had. He gave me the IVF shots I needed every night for weeks. He held me when I cried. He took the screams I threw at him. He was with me at the hospital for surgery. He emptied the drains twice a day when we got home. He washed my hair in the sink when I wasn't allowed to shower and helped me hold the drains so I could attempt to shower as best I could with the hand held shower. He put purple hair dye in my hair, very carefully so he wouldn't stain my scalp. He buzzed my head as my hair started falling out. He told me I was beautiful. He has financially put himself in a spot he wouldn't have otherwise while providing so much financial support for me. He has tried to make my life as normal as it could be during treatments. He rubbed my legs and feet for me when the pain from chemo was too much for me. He fed my cats and scooped their litter box, even though he is allergic to cats, the 4 months I went through chemo and I wasn't able to go near the little box. He put up with my mood swings and outbursts and the abuse (yes, verbal abuse) that I threw at him. And he never made me feel that he didn't love me. Even in the worst of times, when we were fighting, he never ever made me feel like he didn't love me. I have never doubted his love for me.
We have had our ups and downs. cancer takes so much from relationships. Strong marriages have failed. Any cracks are exposed. It isn't easy being someone's caregiver, especially when adjusting to living together at the same time! But he did it. And for the most part, he never complained about it.
He has been my rock. I never would have made it through this past year if I haven't him, his love and his support. He can talk me down from a panic attack (again last night), he can make me feel better about myself, even though that is something I should be able to do for myself. He has picked up the pieces of my shattered self esteem and has loved me. Through all of my meltdowns and outbursts and craziness, he has been here. And for those of you who know me, you have NOT seen the craziness in me that Jim has seen during this past year. Sobbing because chicken is undercooked. Screaming because of too much chaos in Walmart. Yelling at him because we left the house 15 minutes later than I wanted to. Shaking and screaming and crying so many times. Running out of the house in pajamas, in the middle of a full panic attack, because I couldn't breathe and needed air.
Jim took a beating from me in the past year. It has NOT been easy on him. I love him so much and hope to make it up to him in some way. I want and need him to see how much I love and appreciate him. I need to make him feel that from me. He knows that I love him and tells me all the time that he sees that in my eyes, but I need for him to feel the respect and appreciation I have for him and our relationship.
If things don't work out between him and I, yes, I will be completely devastated. He means so much to me. I cannot see my life without him in it. Everything I picture for my future has him by my side. He is my partner. I love him with all I have to give.
But more importantly than me wanting him in my life, I want him to be happy. I want good things for him and for him to be truly happy. If that is without me as part of his life, that is something I will have to deal with. I hope to God it isn't how things end up, but if it is and if he is happier without me, I will manage if I know he is happy. I will be heartbroken, but I will manage.
SO those are a few of the many many things I am grateful for during my 38th year. My life has changed completely. I have learned many many lessons and I have learned so much about so many people, including myself. My priorities have shifted. I still have the anxiety that I developed but I am doing my best to live in the moment and enjoy the hear and now. This single moment will never come again. Enjoy it!
Surround yourself with people who lift you up and bring you joy. Life is too short to be torn down and unhappy. Laugh and have fun! Do what makes you happy. Walk barefoot in the grass and smell the roses. Feel the raindrops on your face. Watch the sun rise and a new day begin. Find your passion in life and do it! Go for it! Believe in yourself. Be happy.
I have a wonderful group of people in my life. My circle of friends is amazing. They lift me up and support and encourage me. They believe in me and help me believe in myself. And they love me, all my faults and cracks and craziness, they love me!
So I'm working on the rest and trusting and believing that things in my life will fall into place and will happen as they should. I will be where I need to be, when I need to be there.
There is some reason why this past year was part of my life. I'm not sure yet what it was, but some day I will figure that out. It has changed the direction of my life and has given me a renewed purpose. The friendships that have begun or been reconnected, or strengthened are such a blessing to me. I am a different person because of the good and the not so good of the past year. This is now a part of me.
Last week I saw many extended cousins at a wake. One cousin is being treated for breast cancer at the exact same treatment center location I was treated at (I will be visiting her today during her chemo treatment, like my chemo buddies did for me). Someone close to her said something to me that touched me. She told me that my cousin knows what I have gone through in the past year and I have been an inspiration to her and have given her strength, because if I could do it, so could she.
Maybe that was part of why I had to go through this year. There were lessons I needed to learn in my life, people who needed to come and go in my life and maybe it was a way for me to know how to give back and help others, even if that is just purely because I was in this club before her.
I'm looking forward to all of the possibilities of my 39th year. Who knows what will happen next. But as of this moment, I'm hopeful and happy. I want to hold on to this and believe it and live it and be it. Fingers crossed!
Wish me luck on all of my new beginnings!! I wish them to you as well. :)
Yesterday was my birthday. My 39th birthday. I have never been this happy to be another year older! 38 sucked and there is really no other way to say it. I had surgery on my wrist on September 27th last year. A week and a half later I found the lump and on October 29th I got the call. Year from hell.
But now, 38 is DONE! I closed the door on it and have moved on to 39. YAY!
Last night I did a journaling exercise I did years ago with a now retired life coach I worked with. Joan used this for New Year's but my birthday is the start of a new year for me. Plus, with my birthday being the same time of year that school starts up, it is full of newness for me. Here is the link to Joan's coaching page if anyone has interest in what I used to journal. http://www.joancollinscoach.com/cb1206.html
Since I started doing this MANY years ago, I have been naming my year. It gives the year a theme and intention. I don't think (or don't remember anyway) I did this for 2013. It was right before my surgery. I could have. I might have even written here about it! Gotta love chemo brain!
For my 39th birthday, I named my 39th year. This is the year of new beginnings. I'm cancer free and and done with active treatment. This is the start of a healthier life for me. Jim and I have had many issues, but we have decided to work on things and to give it another chance, all in for both of us. We are having a new beginning in our relationship as well.
I'm still trying to figure out what I want to be when I grow up, but I am looking into going back to school part time and finishing up my degree (depending on financial aide and all of the costs associated with it) and moving into the health and human services field. It is important for me to give back and help other women who are or will be where I was. I want to pass along when I have learned.
Within that, I want to use what I know as a fitness instructor, become a certified personal trainer, and also start other trainings. I want to become a certified yoga instructor, take nutrition classes and become a life coach as well. I think with the combination of all of that I will have so many tools available for a whole health perspective, along with my own personal experiences.
This past year I lost a lot. Not only my breasts with the bilateral mastectomy or my hair with chemo, but my self esteem and confidence as well. I lost my sense of adventure. I lost my fearlessness. I also lost a few friendships in the past year and others which were close, are no longer that close.
But, as I have heard so many others say, there are so many good things that somehow come along with a cancer diagnosis. And I would like to go through so many of those now.
1. I never knew how selfless and giving people could be. I have been unbelievable touched by the outpouring of support I have received from so many people over the past year. The entire island in our kitchen was covered with cards and flowers I have received. One of the flower arrangements I received came in a white basket. I put all the cards in that one basket but I can barely fit anymore in there now. They all mean so much to me and helped me get through SO much. Thank you all for that.
2. My friend Carol in Brazil. We "met" online on WhatNext, which is basically Facebook for cancer. An online social media site for people with cancer or caregivers. We both joined around the same time, shortly after were were diagnosed last fall. I had 2 rounds of IVF, then surgery in early January, followed by chemo and radiation. Carol started chemo before Christmas last year. She had a few months of that, then surgery, then more chemo, then radiation.
We just GOT what the other was going through. She understood my fears. She knew how hard it was to lose my hair. She knew the struggles with relationships, with depression, anxiety, fatigue. She just understood because she was going through it all as well.
Carol prepped me for my start of chemo and gave me so many tips and helpful hints. I passed along information to her about surgery and let her know things she could do to help. We sent each other care packages, Boston to Brazil.
Carol gave me strength and courage to forge on when I didn't have any of my own. We have never met in person, but she is an amazing friend who I will cherish forever. I cannot wait to meet her in person and we are already working on planning that within the next year. Meeting her is on my list of 40 things to do before I'm 40!
3. Reconnecting and re-establishing old friendships. Without my cancer diagnosis, I don't know if we would have reached out to each other to reconnect as we have, so for that, I am so grateful. The cards, texts, messages, visits, words or support and encouragement... it has all meant so much to me. To not have really spoke, other than a few Facebook messages here and there, in pretty much 7-10 years, these friends from my past have been so unbelievably amazing with the love and support they have provided me with. I treasure the moments and our friendships. Please know how much you and our friendships mean to me.
4. Meeting so many new people.
Everyone at Dana Farber would never have been in my life if it wasn't for breast cancer. They are wonderful people and I love the joy and happiness that they all bring. I have had so many laughs with the wonderful people I have come into contact with.
I won the Boudoir Photo Shoot in January pretty much because of my story. I met Lauren, the photographer, Stephanie the hair stylist, MaryJo the makeup artist and Tricia the stylist. I've happened to bump into MaryJo and Stephanie a few times and Lauren has been so kind to have done 2 additional photo sessions with me. Those photos showed me strength I didn't realize I had. The Boudoir Party was a wonderful night with great friends, days before my surgery.
Strangers in public. I have been out bald for months. It is amazing the conversations that can start! I've met so many other club members.... the cancer club or chemo club or breast cancer club. We all know the look and see something of ourselves in each other. We share tips and advice and pass along information or organizations that we found helpful ourselves. We support each other in a way that non-club members just can't.
5. I had purple hair! I never would have had the courage to have purple hair before! So after cutting it short and not loving the loss of my long hair, I dyed it purple. And LOVED it. I rocked the purple hair! So much so, that I'm actually considering going purple again. Who knows? Why not! It was so much fun. I loved it.
6. Friendships I had were strengthened. Some friends I've had for many many years, and other newer friendships, were strengthened this year. So many provided me with so much support and encouragement and conversation and distractions. I loved the breakfasts, lunches, sitting on the sofa with me and Rocco, getting out and doing something different (like a bike ride, brunch in Cambridge, Tomato Bash), going for walks, text message or email check ins, chemo visits, company at home, cards... ALL of it. WOW!
There are too many people who fall into this category to mention all of you, but I have to mention a few specifically.
My Boudoir Party girls.... each of you have been so wonderful to me this entire year. You have all had so much going on in your own lives.
Tracie, getting engaged, selling your condo & getting married (yes, all that in 2013!) plus other personal things, it was a busy year for you. You made so much time for me and even though you may really have visited just to see Rocco, your visits always made such a difference to me. Grabbing lunch, heading out somewhere like the beach or just hanging on the sofa and catching up, they were all so great. Thank you.
Christine... working INSANE hours, going to school at night, volunteering, then finding replacement roommates and moving! WOW! But every other Tuesday you popped by for a chemo visit with your little happy smiling face. Love you my bucket list friend! Thanks for SUP lesson, the Tomato Bash and the trampolines at SkyZone. I'm willing to try that indoor rock climbing place, surfing, or trying snowboarding again this winter (but the only other time I tried in 2008, I broke my wrist!) and I still want to do outdoor ice skating, so Frog Pond? I love your sense of adventure and confidence. Thank you for your friendship and joy.
Jennifer, in between a vacation, work trips, your engagement, working on your new house, and changing jobs, you were amazing to me! Specifically picking my last chemo treatment to be my chemo buddy so you could celebrate with me. I loved that! ALL of the cards that you sent me mean so much. And wow, did you do TOO much. The breakfast box, and OMG those brownies!! Hmm... I might need to order some for me now! :) The visits you have made, the emails, Paint Nite, SUP, yoga... just to name a few things! Thank you!
I know how lucky I am to have the 3 of you as friends in my life and you mean SO much to me.
Michelle, my friend who tries so hard to get me on the phone when I'm not really a phone person! I'm sorry we have hard a harder time connecting but thank you for not giving up on me. You have done so much for me! You were hear right after surgery (ready to kick the visiting nurse's ASS for having me in tears!). You took me the day after my first chemo for my first shot. You walked in your sneakers in the snow with me, so I could get outside and get a tiny bit of exercise, even though you wanted me tied down so I could rest. I love you. I know you have had a lot on your plate lately and I am sorry I haven't been as good a friend to you as you have been to me. I love you!
Melanie.... love you honey. Please never ever think you haven't done enough. OMG you have done too much. With 2 girls in elementary school, a son who just started college, moving, working full-time, a dog and don't forget your husband! You have SO much. I love the visits and having you and Aly coming down to see me and Rocco (I know it isn't all about me!) when you could. You have done way too much with gifts. It isn't necessary. I love you and our friendship for (WOW!) over 20 years. You are an amazing person and you give way too much of yourself. I love you!
Jennifer, thank you. Another one with a husband, dog, young daughter and who moved! Talk about a busy life! But you always made time. I loved every one of the cards you sent, especially the pickle birthday card in March. You have no idea how many people I have told about that card! You have been so kind to me and your friendship means more to me than I can express. The advice you have given me, all the times you have listened to me vent and you compassionately responded, even if you didn't agree with me. You are one of the blessings that cancer has brought back into my life.
Melissa, another blessing from the past. Thank you. I can be horrible about making plans, especially with the schedule of doctor appointments and fatigue tossed in. But you never gave up on me or getting together. You understood the few times I needed to cancel, even at the last minute. And you have been wonderful about scheduling more time to get together. You have listened to me vent about life and so many insane things that have happened this year and never let time pass with texts or messages. Thank you so much for bringing our friendship back into my life.
There are so many others as well... thank you all SO much for everything you have brought into my life. You haven't made me feel like I was sick or a cancer patient or a burden in anyway. You helped me feel alive and like ME and like the world has been okay, even with me being on pause for a while!
7. Family. My extended family with so many cousins... a guess a benefit of a big family. SO many of the cards in that white basket are from family checking in. Cousin Judy with your crazy text messages and "electronic tuck ins" at night, thank you! Just getting your little "XOXO" message with nothing else means more to me than you know, knowing that I wasn't forgotten is huge!
In addition to my family support is Jim's family. My last day of radiation, last day of active treatment overall, I not only got a congratulations call from Jim's mom, but from her sister as well! His cousin's sent cards and I always had so much support from them all. His cousin's wife even buzzed the back of my head and around my ears last week to clean up my hair. We were sitting around talking for close to 2 hours that day! When in a relationship with someone, you never know what you are going to get with their family. With Jim, I have received a whole new loving, caring, accepting and supportive family of my own. They have just brought me right into their circle and I feel so at home with them all. I'm very lucky to have them in my life and so touched about the support they have provided me with this year.
8. Jim. We have been on a roller coaster this year. We were away for my 38th birthday. A month later, he asked me to move in. That was the same weekend I found the lump. A few weeks later I was diagnosed with breast cancer.
After I got that call, I remember running to our bedroom and collapsing on the bed in tears. He held me there for hours. I told him I understood if he wanted to take it back, if he didn't want me to move in with him, if he wanted to break up. I couldn't walk away from cancer, he could. He hadn't signed up for that. I will never forget his answer.
"I'm not walking away from my best friend."
Jim has shown me what true love really is. He unpacked my mail order meds for me. He came to almost every doctor appointment I have had. He gave me the IVF shots I needed every night for weeks. He held me when I cried. He took the screams I threw at him. He was with me at the hospital for surgery. He emptied the drains twice a day when we got home. He washed my hair in the sink when I wasn't allowed to shower and helped me hold the drains so I could attempt to shower as best I could with the hand held shower. He put purple hair dye in my hair, very carefully so he wouldn't stain my scalp. He buzzed my head as my hair started falling out. He told me I was beautiful. He has financially put himself in a spot he wouldn't have otherwise while providing so much financial support for me. He has tried to make my life as normal as it could be during treatments. He rubbed my legs and feet for me when the pain from chemo was too much for me. He fed my cats and scooped their litter box, even though he is allergic to cats, the 4 months I went through chemo and I wasn't able to go near the little box. He put up with my mood swings and outbursts and the abuse (yes, verbal abuse) that I threw at him. And he never made me feel that he didn't love me. Even in the worst of times, when we were fighting, he never ever made me feel like he didn't love me. I have never doubted his love for me.
We have had our ups and downs. cancer takes so much from relationships. Strong marriages have failed. Any cracks are exposed. It isn't easy being someone's caregiver, especially when adjusting to living together at the same time! But he did it. And for the most part, he never complained about it.
He has been my rock. I never would have made it through this past year if I haven't him, his love and his support. He can talk me down from a panic attack (again last night), he can make me feel better about myself, even though that is something I should be able to do for myself. He has picked up the pieces of my shattered self esteem and has loved me. Through all of my meltdowns and outbursts and craziness, he has been here. And for those of you who know me, you have NOT seen the craziness in me that Jim has seen during this past year. Sobbing because chicken is undercooked. Screaming because of too much chaos in Walmart. Yelling at him because we left the house 15 minutes later than I wanted to. Shaking and screaming and crying so many times. Running out of the house in pajamas, in the middle of a full panic attack, because I couldn't breathe and needed air.
Jim took a beating from me in the past year. It has NOT been easy on him. I love him so much and hope to make it up to him in some way. I want and need him to see how much I love and appreciate him. I need to make him feel that from me. He knows that I love him and tells me all the time that he sees that in my eyes, but I need for him to feel the respect and appreciation I have for him and our relationship.
If things don't work out between him and I, yes, I will be completely devastated. He means so much to me. I cannot see my life without him in it. Everything I picture for my future has him by my side. He is my partner. I love him with all I have to give.
But more importantly than me wanting him in my life, I want him to be happy. I want good things for him and for him to be truly happy. If that is without me as part of his life, that is something I will have to deal with. I hope to God it isn't how things end up, but if it is and if he is happier without me, I will manage if I know he is happy. I will be heartbroken, but I will manage.
SO those are a few of the many many things I am grateful for during my 38th year. My life has changed completely. I have learned many many lessons and I have learned so much about so many people, including myself. My priorities have shifted. I still have the anxiety that I developed but I am doing my best to live in the moment and enjoy the hear and now. This single moment will never come again. Enjoy it!
Surround yourself with people who lift you up and bring you joy. Life is too short to be torn down and unhappy. Laugh and have fun! Do what makes you happy. Walk barefoot in the grass and smell the roses. Feel the raindrops on your face. Watch the sun rise and a new day begin. Find your passion in life and do it! Go for it! Believe in yourself. Be happy.
I have a wonderful group of people in my life. My circle of friends is amazing. They lift me up and support and encourage me. They believe in me and help me believe in myself. And they love me, all my faults and cracks and craziness, they love me!
So I'm working on the rest and trusting and believing that things in my life will fall into place and will happen as they should. I will be where I need to be, when I need to be there.
There is some reason why this past year was part of my life. I'm not sure yet what it was, but some day I will figure that out. It has changed the direction of my life and has given me a renewed purpose. The friendships that have begun or been reconnected, or strengthened are such a blessing to me. I am a different person because of the good and the not so good of the past year. This is now a part of me.
Last week I saw many extended cousins at a wake. One cousin is being treated for breast cancer at the exact same treatment center location I was treated at (I will be visiting her today during her chemo treatment, like my chemo buddies did for me). Someone close to her said something to me that touched me. She told me that my cousin knows what I have gone through in the past year and I have been an inspiration to her and have given her strength, because if I could do it, so could she.
Maybe that was part of why I had to go through this year. There were lessons I needed to learn in my life, people who needed to come and go in my life and maybe it was a way for me to know how to give back and help others, even if that is just purely because I was in this club before her.
I'm looking forward to all of the possibilities of my 39th year. Who knows what will happen next. But as of this moment, I'm hopeful and happy. I want to hold on to this and believe it and live it and be it. Fingers crossed!
Wish me luck on all of my new beginnings!! I wish them to you as well. :)
Saturday, August 31, 2013
Almost September
When I woke up this morning, I was scrolling through Facebook. I have "liked" so many pages that give quotes and whatnot, that's what fills up the wall when I go through. One quote after an other was about looking at the positive, manifesting the good, focusing on happiness. Of course I woke up grouchy.
I'm trying to see the positives in life and I'm trying to make more of an effort to focus on that. For me, it isn't so much good days or not good days. It is more of a moment to moment thing. I can be happy and excited in one moment then down and in tears the next. Gotta love mood swings.
Thursday I tried to have a good day. Moved things around the house and did a TON of cleaning. Went food shopping and came home to cook dinner. Of course saw a mouse run through the kitchen and FREAKED OUT. Dinner was already cooking and it was when I was putting away the rest of the groceries.
My timing for dinner got all messed up with the mouse. I cut the chicken to see if it was done, but I guess it wasn't ALL done. I thought I cut a piece in the middle of the pan. Anyway, my piece was fine. Jim's wasn't. It wasn't all the way cooked. He told me. I started bawling. Over uncooked chicken. That lead to, "I can't do anything right. I can't even cook chicken."
Friday I slept in, which was very much needed. Even with the 1 hour nap I had on Thursday afternoon, I still slept 11 hours on Thursday night. Guess I was pretty tired. After I got up and had breakfast/lunch (slept until 11am), I was online for a short while, then showered around 1 and out the door at 1:30. I had a massage at Dana Farber from 2-3. I LOVE that they still offer the massages there for only $20 for patients.
After I was done with the massage, my friend Christine met me. She was going with me to use a Groupon I had purchased. For SkyZone, an indoor trampoline place. It was SO much fun, but absolutely EXHAUSTING. We had one hour there and didn't even make 45 minutes. We first hit the bathrooms, then walked around a little. We slowly started jumping, but that was exhausting! Then we tried jumping into the foam pit. After that, Christine played Dodge Ball with the 10 year old boys. It was too cute, cuz none of the boys would throw at her. I guess none of them wanted to whip the ball at a girl. :)
We went back on the trampolines again. I actually did a front tuck twice! I didn't think I could but yay. I almost landed on my feet the 2nd time. (yeah, on my butt both times I tried, but hey, I tried right?) Then we did one more time into the foam pit and called it a day. We were both sweating ouot butts off! That was definitely a workout!
Here's a quick shot Christine took of us after, when we were walking back to the car.
She is just too cute! Love that she's always willing to do crazy things like Sky Zone or the Tomato Bash. And she knows that I'm usually up for those crazy things too. She's been crossing things off her bucket list left and right with me.
I was pretty tired after that 40 minutes (not all of jumping either!) but I did go out for dinner with Jim last night. Then we came home and watched some tv.
Last night I was able to sleep again, around midnight to about 9:30. That was pretty good. I needed it, even though I could nap again. The fatigue is pretty frustrating. I hate not having any energy. Since getting out of bed around 10:30, I moved the sofa and haven't moved. Its after 1pm now. I feel like I'm just wasting days away.
My dreams last night were pretty rough. Nightmares. I've been having them pretty often lately. Someone trying to kill me. Last night it was some unknown group that was making plots to kill me and others. A few were trying to help us, but it was hard to know who to trust. I kept trying to escape but every time, it was a close super close call for me being found and killed. I hate having dreams like that.
I know that I have dreams like that when I'm worried. My fears are after me and I'm running, hiding, and trying to escape. Getting some help on the way, but having a hard time trusting people to help me and so afraid of my fears catching up to me and getting me. I can't even escape it all, even in my sleep. So I wake up grouchy and cranky and moody.
In theory, I know I need to focus on the positives and that I need to be happy for the good things in my life, but that is SO much easier to say than to do all the time. And it isn't all day every day that I'm down. I had a blast with Christine at SkyZone. Dinner out last night was good too. But when I sit and have time and think? I get into my head. Then the stories start and then the anxiety starts spinning and goes out of control. That's when I get even more down.
My mood swings are triggered more when I'm stressed. I've been trying to limit stress and that's not easy either.
So, I need to find things to do, to focus on, so I can get out of my head and stop obsessing about my fears. That will help stop the anxiety as well and lower my stress level and keep me happier overall. Plus it will keep everyone around me happier! I won't be a crazy moody bitch!
Here's to being positive that I find something positive to focus on. :) Happy weekend.
I'm trying to see the positives in life and I'm trying to make more of an effort to focus on that. For me, it isn't so much good days or not good days. It is more of a moment to moment thing. I can be happy and excited in one moment then down and in tears the next. Gotta love mood swings.
Thursday I tried to have a good day. Moved things around the house and did a TON of cleaning. Went food shopping and came home to cook dinner. Of course saw a mouse run through the kitchen and FREAKED OUT. Dinner was already cooking and it was when I was putting away the rest of the groceries.
My timing for dinner got all messed up with the mouse. I cut the chicken to see if it was done, but I guess it wasn't ALL done. I thought I cut a piece in the middle of the pan. Anyway, my piece was fine. Jim's wasn't. It wasn't all the way cooked. He told me. I started bawling. Over uncooked chicken. That lead to, "I can't do anything right. I can't even cook chicken."
Friday I slept in, which was very much needed. Even with the 1 hour nap I had on Thursday afternoon, I still slept 11 hours on Thursday night. Guess I was pretty tired. After I got up and had breakfast/lunch (slept until 11am), I was online for a short while, then showered around 1 and out the door at 1:30. I had a massage at Dana Farber from 2-3. I LOVE that they still offer the massages there for only $20 for patients.
After I was done with the massage, my friend Christine met me. She was going with me to use a Groupon I had purchased. For SkyZone, an indoor trampoline place. It was SO much fun, but absolutely EXHAUSTING. We had one hour there and didn't even make 45 minutes. We first hit the bathrooms, then walked around a little. We slowly started jumping, but that was exhausting! Then we tried jumping into the foam pit. After that, Christine played Dodge Ball with the 10 year old boys. It was too cute, cuz none of the boys would throw at her. I guess none of them wanted to whip the ball at a girl. :)
We went back on the trampolines again. I actually did a front tuck twice! I didn't think I could but yay. I almost landed on my feet the 2nd time. (yeah, on my butt both times I tried, but hey, I tried right?) Then we did one more time into the foam pit and called it a day. We were both sweating ouot butts off! That was definitely a workout!
Here's a quick shot Christine took of us after, when we were walking back to the car.
She is just too cute! Love that she's always willing to do crazy things like Sky Zone or the Tomato Bash. And she knows that I'm usually up for those crazy things too. She's been crossing things off her bucket list left and right with me.
I was pretty tired after that 40 minutes (not all of jumping either!) but I did go out for dinner with Jim last night. Then we came home and watched some tv.
Last night I was able to sleep again, around midnight to about 9:30. That was pretty good. I needed it, even though I could nap again. The fatigue is pretty frustrating. I hate not having any energy. Since getting out of bed around 10:30, I moved the sofa and haven't moved. Its after 1pm now. I feel like I'm just wasting days away.
My dreams last night were pretty rough. Nightmares. I've been having them pretty often lately. Someone trying to kill me. Last night it was some unknown group that was making plots to kill me and others. A few were trying to help us, but it was hard to know who to trust. I kept trying to escape but every time, it was a close super close call for me being found and killed. I hate having dreams like that.
I know that I have dreams like that when I'm worried. My fears are after me and I'm running, hiding, and trying to escape. Getting some help on the way, but having a hard time trusting people to help me and so afraid of my fears catching up to me and getting me. I can't even escape it all, even in my sleep. So I wake up grouchy and cranky and moody.
In theory, I know I need to focus on the positives and that I need to be happy for the good things in my life, but that is SO much easier to say than to do all the time. And it isn't all day every day that I'm down. I had a blast with Christine at SkyZone. Dinner out last night was good too. But when I sit and have time and think? I get into my head. Then the stories start and then the anxiety starts spinning and goes out of control. That's when I get even more down.
My mood swings are triggered more when I'm stressed. I've been trying to limit stress and that's not easy either.
So, I need to find things to do, to focus on, so I can get out of my head and stop obsessing about my fears. That will help stop the anxiety as well and lower my stress level and keep me happier overall. Plus it will keep everyone around me happier! I won't be a crazy moody bitch!
Here's to being positive that I find something positive to focus on. :) Happy weekend.
Thursday, August 29, 2013
Right now I feel like I'm in a strange place. I want to move forward but I don't know where towards. I don't know what steps to take. I know I have to let go of things, but of which things? Which relationships?
How do I move forward if I don't know where I want to go?
Every year, as my birthday approaches, I seem to become very reflective. Sort like New Year Resolutions, I always set an intention for my birthday year and goals for that year. Maybe I take it a bit more than most with my birthday falling at the back to school time of year. Early September always seems like a time of new beginnings for me.
The past year has been full of incredible challenges for me. I know that I have changed. I'm not the same person I was last Labor Day weekend. So many relationships in my life have changed in the past year. Old friends are back in my life. Friends I had a year ago are no longer around. And my personality has changed.
Those who know me will easily agree that I have never been a patient person. If I made a decision or know that a task needs to be done, I do what it takes to complete it. I put my all into it... immediately. Why wait around? If I want help with someone, I hate waiting. I'll do what I can on my own. Maybe that's how I became so independent. I never had the patience to wait for anyone's assistance.
But now? My patience level is less and in different ways. I have less patience with other people in my life. Relationships are a give and take. Not always 50/50, sometimes 25/75, but always a give and take. I have had some people this year who I only hear from when I make contact or when I make plans. This year. While I was going through chemo and treatment and recovery. My patience is pretty much gone in those situations.
I know I haven't been easy to deal with, especially lately with a new med only 2 1/2 weeks old. The hot flashes are back. Leg pain has started up again, almost every night (why it LOVES to be in my left knee, I have NO idea) and Aleve hasn't helped so far. I don't want to try anything stronger yet.
And then there are the mood swings that this drug causes. Yeah, I've been a peach for the past 2 weeks. I go from happy to tears in seconds. Toss in the issues with Jim while going through these side effects, and I've been all over the place. I don't know which way is up right now.
When I find little things that make me happy, I try to cling on to those. So often I feel so down and insecure and scared. I cling to whatever gives me any amount of joy or comfort.
Having control in life is only an illusion. There is no control. Maybe that's why I could never do a 5 year plan and only focused on one year at a time. Five years? Too many outside influences can change too many small things and that plan, road map... gone and derailed. No control.
I had a plan in my life. HA HA. Look at me now. Been out of work on disability since January 9th because of a bilateral mastectomy, followed by chemo and radiation. I still nap every damn day. When I have a "good day" with energy, I always seem to push it too much and end up toast the next day. Tuesday was a good day this week. I took Rocco for a walk in the park and did yoga at home too. Wednesday? I was on the sofa almost all day and didn't take a shower until after 7pm.
But now I'm scared. I can't stop thinking about having an abnormal pap and now needing to check for cervical cancer. That procedure is 4 weeks from today. Then only 2 1/2 weeks later I will have my ovaries and fallopian tubes removed on Columbus Day, October 14th. I may have mentioned (chemo brain f'ing SUCKS) that with the preventative surgery having ovaries and fallopian tubes removed, 5% of the time cancer is found. If its grade 3, even at stage 1, I would need chemo again.
All that I can think about is that right now I have cancer inside of me again. A different kind, in a different place, unrelated to what I have already been through. And I will need to start treatment all over again. Do I have cervical cancer right now? Do I have ovarian cancer right now? I could.
Hearing, "it tested positive for cancer" once makes it a possibility for everything that could ever happen again. Every ache or pain... did it spread? Is it back? Is it somewhere else?
I've heard and read that these reactions, these fears... they are normal. Great. Somehow that is not comforting.
So now I feel stuck. Where am I going? What do I want my next year to look like? What will 39 be like for me? What goals do I set and work towards? What direction do I go?
I know I want to be cancer free and I am doing all I can to make sure that is the case. That's why I'm taking this new drug with the horrible side effects. That's why I am having a test done in 4 weeks to check for cervical cancer. That's why I'm having my ovaries and fallopian tubes removed. That's why I'm trying to start exercising again and changing my diet to more organic and whole foods. I want to do whatever I can do within my power to NEVER again have to go through what I have been through in the past year.
Okay... so I want to be cancer free. I am working on that now and doing what I can do for that, making those changes in my life. But what else? What else do I want to do? What other goals do I have? Where to I want to go? What do I want to do with my life? Who do I want to be?
I don't know.
I want to be happy. I want to feel good about myself. I want my confidence back. I want to have self esteem again. I want to feel attractive. And right now I have very very few of these in my life.
Sometimes I'm happy. I have some happy moments. Mostly I'm anxious or tired.
Sometimes I feel good about myself, like when I finish a good walk with Rocco or yoga, or when I complete something I have been working on.
I don't have my confidence. I don't have my self esteem. I used to have so much and I miss it so much. I feel afraid of so many things now. I am not secure enough in myself for too many things. My feet are so weak in the morning, I won't walk on stairs. My vision can be funky still between chemo and this new drug. Plus fatigue and chemo brain. I will drive places I know, when it is daytime. I don't like driving at night and I HATE going new places I am not familiar with. Driving longer distances is still hard too. I just get SO tired. I never had an issue going places... it was just road rage before!
And feeling attractive? Yeah, that's a joke. I got an email from Old Navy today with 40% off of jeans. I was thinking of buying a pair since I have such a limited wardrobe right now. If I do, it would be 3 sizes bigger than what I was wearing a year ago. Yup, up 3 f'ing sizes. Toss in loss of muscle, the scars and my change in hairstyles? No, I don't feel attractive.
It used to be a joke that the worse I looked, the nastier I was from working out, the more I got hit on. I would finish a kickboxing class, be dripping in sweat, wearing my gym clothes, and stop to grab something to eat on the way home. More often than not, someone would either flirt with me, hit on me, or flat out ask me out.
I don't remember the last time someone flirted with me. Why would anyone? I'm overweight and have the "I finished chemo" hairstyle going.
After my weekend away in Utah, I'm keeping in touch with most of the women I spent the weekend with, mostly through email. One email I got the other day was almost hard for me to read, and it shouldn't be. She said:
I was going to tell you I couldn't believe how beautiful you are with long blonde hair. And now your a short haired gorgeous warrior! I know you said you were suffering from self image things but you shouldn't cause you're beautiful. But I do understand that I have a feeling the same way . Don't forget there's many out there like you and me and it's such a change in our room in our world but just know you're beautiful .
I don't think I'm beautiful. I think my long blonde hair was beautiful. I think my body looked pretty good when I was thin and fit. But now? No. I don't think I'm beautiful. And I have a hard time hearing others say that to me.
SO now I need to figure out what I want out of my life. Where do I want to go and who do I want around me? What do I want my life to look like in a year, in addition to me being cancer free?
I have no freakin idea and that scares the crap out of me.
How do I move forward if I don't know where I want to go?
Every year, as my birthday approaches, I seem to become very reflective. Sort like New Year Resolutions, I always set an intention for my birthday year and goals for that year. Maybe I take it a bit more than most with my birthday falling at the back to school time of year. Early September always seems like a time of new beginnings for me.
The past year has been full of incredible challenges for me. I know that I have changed. I'm not the same person I was last Labor Day weekend. So many relationships in my life have changed in the past year. Old friends are back in my life. Friends I had a year ago are no longer around. And my personality has changed.
Those who know me will easily agree that I have never been a patient person. If I made a decision or know that a task needs to be done, I do what it takes to complete it. I put my all into it... immediately. Why wait around? If I want help with someone, I hate waiting. I'll do what I can on my own. Maybe that's how I became so independent. I never had the patience to wait for anyone's assistance.
But now? My patience level is less and in different ways. I have less patience with other people in my life. Relationships are a give and take. Not always 50/50, sometimes 25/75, but always a give and take. I have had some people this year who I only hear from when I make contact or when I make plans. This year. While I was going through chemo and treatment and recovery. My patience is pretty much gone in those situations.
I know I haven't been easy to deal with, especially lately with a new med only 2 1/2 weeks old. The hot flashes are back. Leg pain has started up again, almost every night (why it LOVES to be in my left knee, I have NO idea) and Aleve hasn't helped so far. I don't want to try anything stronger yet.
And then there are the mood swings that this drug causes. Yeah, I've been a peach for the past 2 weeks. I go from happy to tears in seconds. Toss in the issues with Jim while going through these side effects, and I've been all over the place. I don't know which way is up right now.
When I find little things that make me happy, I try to cling on to those. So often I feel so down and insecure and scared. I cling to whatever gives me any amount of joy or comfort.
Having control in life is only an illusion. There is no control. Maybe that's why I could never do a 5 year plan and only focused on one year at a time. Five years? Too many outside influences can change too many small things and that plan, road map... gone and derailed. No control.
I had a plan in my life. HA HA. Look at me now. Been out of work on disability since January 9th because of a bilateral mastectomy, followed by chemo and radiation. I still nap every damn day. When I have a "good day" with energy, I always seem to push it too much and end up toast the next day. Tuesday was a good day this week. I took Rocco for a walk in the park and did yoga at home too. Wednesday? I was on the sofa almost all day and didn't take a shower until after 7pm.
But now I'm scared. I can't stop thinking about having an abnormal pap and now needing to check for cervical cancer. That procedure is 4 weeks from today. Then only 2 1/2 weeks later I will have my ovaries and fallopian tubes removed on Columbus Day, October 14th. I may have mentioned (chemo brain f'ing SUCKS) that with the preventative surgery having ovaries and fallopian tubes removed, 5% of the time cancer is found. If its grade 3, even at stage 1, I would need chemo again.
All that I can think about is that right now I have cancer inside of me again. A different kind, in a different place, unrelated to what I have already been through. And I will need to start treatment all over again. Do I have cervical cancer right now? Do I have ovarian cancer right now? I could.
Hearing, "it tested positive for cancer" once makes it a possibility for everything that could ever happen again. Every ache or pain... did it spread? Is it back? Is it somewhere else?
I've heard and read that these reactions, these fears... they are normal. Great. Somehow that is not comforting.
So now I feel stuck. Where am I going? What do I want my next year to look like? What will 39 be like for me? What goals do I set and work towards? What direction do I go?
I know I want to be cancer free and I am doing all I can to make sure that is the case. That's why I'm taking this new drug with the horrible side effects. That's why I am having a test done in 4 weeks to check for cervical cancer. That's why I'm having my ovaries and fallopian tubes removed. That's why I'm trying to start exercising again and changing my diet to more organic and whole foods. I want to do whatever I can do within my power to NEVER again have to go through what I have been through in the past year.
Okay... so I want to be cancer free. I am working on that now and doing what I can do for that, making those changes in my life. But what else? What else do I want to do? What other goals do I have? Where to I want to go? What do I want to do with my life? Who do I want to be?
I don't know.
I want to be happy. I want to feel good about myself. I want my confidence back. I want to have self esteem again. I want to feel attractive. And right now I have very very few of these in my life.
Sometimes I'm happy. I have some happy moments. Mostly I'm anxious or tired.
Sometimes I feel good about myself, like when I finish a good walk with Rocco or yoga, or when I complete something I have been working on.
I don't have my confidence. I don't have my self esteem. I used to have so much and I miss it so much. I feel afraid of so many things now. I am not secure enough in myself for too many things. My feet are so weak in the morning, I won't walk on stairs. My vision can be funky still between chemo and this new drug. Plus fatigue and chemo brain. I will drive places I know, when it is daytime. I don't like driving at night and I HATE going new places I am not familiar with. Driving longer distances is still hard too. I just get SO tired. I never had an issue going places... it was just road rage before!
And feeling attractive? Yeah, that's a joke. I got an email from Old Navy today with 40% off of jeans. I was thinking of buying a pair since I have such a limited wardrobe right now. If I do, it would be 3 sizes bigger than what I was wearing a year ago. Yup, up 3 f'ing sizes. Toss in loss of muscle, the scars and my change in hairstyles? No, I don't feel attractive.
It used to be a joke that the worse I looked, the nastier I was from working out, the more I got hit on. I would finish a kickboxing class, be dripping in sweat, wearing my gym clothes, and stop to grab something to eat on the way home. More often than not, someone would either flirt with me, hit on me, or flat out ask me out.
I don't remember the last time someone flirted with me. Why would anyone? I'm overweight and have the "I finished chemo" hairstyle going.
After my weekend away in Utah, I'm keeping in touch with most of the women I spent the weekend with, mostly through email. One email I got the other day was almost hard for me to read, and it shouldn't be. She said:
I was going to tell you I couldn't believe how beautiful you are with long blonde hair. And now your a short haired gorgeous warrior! I know you said you were suffering from self image things but you shouldn't cause you're beautiful. But I do understand that I have a feeling the same way . Don't forget there's many out there like you and me and it's such a change in our room in our world but just know you're beautiful .
I don't think I'm beautiful. I think my long blonde hair was beautiful. I think my body looked pretty good when I was thin and fit. But now? No. I don't think I'm beautiful. And I have a hard time hearing others say that to me.
SO now I need to figure out what I want out of my life. Where do I want to go and who do I want around me? What do I want my life to look like in a year, in addition to me being cancer free?
I have no freakin idea and that scares the crap out of me.
Monday, August 26, 2013
Weekend in the Clouds
This past weekend was amazing. I didn't even know how much I needed it. What an absolutely wonderful experience! If you have gone through breast cancer or if you know someone who has, this is so highly recommended. Here is the website for more information:
http://imagerebornfoundation.org/
To say the resort we stayed at was beautiful is such an understatement. We had 2 suits in this mountainside resort. The building itself was sort of "V" shaped. I was in Room # 702, right at the point of the "V".
The door to 702 is right at the corner. The little backwards "C" is the curving staircase that leads up to the master bedroom and master bath (plus the media room, but we didn't use that). Right where the red dot for "you are here" is, well, that's the 1st floor of the suit. Upstairs, so technically on the 8th floor, was my bedroom, the master bedroom, right at the point of the V overlooking the whole valley. WOW!
Here is an outdoor shot of the Canyons Ranch Resort which we were in.
From this picture, which I copied from their website, the point of the "V", ^ right there, was where we were. The 5th, 6th and 7th floors have all windows pointing out. And above those sets of square windows is the roof gable wall of windows. THAT was my bedroom for the weekend. WOW!
Here are a few pictures of the bedroom and bathroom I had... and YES I took a bath! How could I NOT?
Yes, two window seats looking out on either side with the WALL of windows on the other wall, well minus the fireplace in the middle.
On Saturday morning, I woke up SO early. But being 2 hours behind what I was used to, I guess not too bad. Anyway, I was up for sunrise. It was foggy over the valley below. WOW, talk about breathtaking!
So its no wonder that I got to just be this weekend.
They had a nutritionist, restorative yoga class, "sex"pert, photographer, as well as giving us facials and massages. We were just treated. The only rule they had was we couldn't do anything. We weren't allowed to help. Not prep dinner, clean up, move anything. Their whole premise is to just take care of women who have gone through breast cancer, to pamper them. And pamper they did!
It was so nice to meet and bond with other women who just "get it". We could laugh together about how all of us have chemo brain (one even a full year out!). We also laughed when the "sex"pert pulled out the big purple vibrating penis. That was interesting. :)
But we also cried and supported each other. We understand each other in a way that not too many others do. Under 40, breast cancer, chemo, radiation, all the wonderful side effects associated with each.
One thing I noticed is that each of us talked of the incredible support we received, and so much from unexpected places. People we had lost touch with who came back, one was living in Germany where her husband worked. Her mom dropped everything and spent 2 months living with them in Germany to help care for her four (yes, four!) children. Another woman, her husbands coworkers sent so many meals over for them, people she didn't know! She was also breast feeding and found organizations and networks of women to donate breast milk for her son, since she was unable to breast feed while going through chemo.
We all also had those who disappointed us, or those we expected to be more supportive who just weren't. One woman said a very good friend told her, "I'm sorry, I just can't do it."
One thing that was interesting happened when we were talking about how hard it is to ask for help. We try and when we ask, it was when we REALLY needed it, since it was so hard to ask for in the first place. I shared my story.... of two people who were friends. The first email which said I only communicate when I want something, I guilt her into doing things and maybe I would get more help if I didn't ask. I also shared that the next day I was emailing with another friend when I said how depressed I was and that I was basically suicidal. The response was, "I don't want to say the wrong thing, so I will leave it there". And when I was venting about all of it, without names or specifics, on my blog, that I used to get the emotional craziness that all of us understood, out of my head, she didn't like it, copied and pasted and highlighted parts she didn't like to point out how I was wrong and then she replied to me and cc'd in another 9 people.
The first thing they told me (and after only my story of the first email) was, "You are NOT friends with this person anymore, right? OH MY GOD! She knew you were going through chemo? For breast cancer? And she STILL said all that? WOW!"
They were all completely blown away when I shared the story of the 2nd email. They understood how you don't know people until a crisis hits. It is just shocking, in good ways and in bad, who is there and who isn't or worse.
It was really nice for me to be with women who understood how I felt after both of those situations. They completely got the fear, anxiety, loneliness, stress, doubt, anger, and all the other emotions that come along with breast cancer, the treatment and the wonderful world of side effects. They understood how the 2-4am time can be the worst, the most scary time. When your biggest fears are right in your face and you are completely alone to see it all. They just got it.
We all had our different stories, different lives. One is 36, married with 4 kids, diagnosed while breast feeding her youngest. She had a bilateral with expander, then had chemo and radiation. Her swap out surgery for her permanent implants was in February. She was living in Germany when she was diagnosed and treated and but is back in the US now. She was stage II.
Another is also married, with 2 kids and she is 38 years old. She was diagnosed while she was 22 weeks pregnant with her son. She had to make the decision, within 2 weeks, if she wanted to keep the pregnancy or terminate since abortions are not allowed after 24 weeks. She started AC chemo while she was pregnant. Had her son and 2 weeks later had a single mastectomy with lymph nodes removed. Then she went through more chemo, followed by radiation which she had horrible burns from. She hasn't had any reconstruction yet. She was stage III.
One other was stage II. She had a lumpectomy without clear margins. She needed a second lumpectomy and had lymph node dissection and her port put in all during that second surgery. She is 34, single and no kids. She stayed with her parents after surgery and for a few days after each chemo treatment.
The last was with her boyfriend and has 2 children. Her daughter is 4 and her son is 1. She felt a lump while she was breastfeeding but they told her it was just because she was breastfeeding. Besides, at 31, how could it be breast cancer? Her son was 5 months by the time she was diagnosed. After her scans, they found cancer in her bones, liver and brain, along with her breast. She had chemo and stopped that for them to start radiation on her brain. Many of her tumors shrunk during chemo and none were showing on her liver when she stopped chemo. But now they are back in her breast and she is starting more chemo next week. She will be 33 in the fall and she is stage IV.
They are all beautiful, strong, compassionate, funny, courageous, loving women who are in a club that none of us wanted to join. But there we were, trading stories and tears and laughter, sitting in big fluffy white robes, relaxed and peaceful after our facials and massages passing vibrating cock rings around the room that looked out over the beautiful mountains and valley below.
I am so grateful for the weekend. For the first time in a very very long time, I felt content. There is no other word that could better describe it. I was just content. I could just be. There were no expectations on me, no where I had to be, no one I had to talk to, nothing I had to do. I could just sit and just be. I was content.
Now I want to see how I can take that feeling with me and continue to feel that way in real life, away from 7000 feet elevation, and back to my reality. I need to find a way to tap into that experience and feel that sort of peace.
Saturday morning I woke up and saw the sun rise over the mountains and sat in awe at the beauty out my windows. When the sun was up, I went into the luxurious bathroom and took a bath. While I was in there, I pulled up Enya on my playlist. Later that afternoon, while I was laying in my robe having the most incredible facial, Enya was also playing.
Now I know that going forward, whenever I hear Enya I will instantly be brought back to the mountains in Park City, Utah.
http://imagerebornfoundation.org/
To say the resort we stayed at was beautiful is such an understatement. We had 2 suits in this mountainside resort. The building itself was sort of "V" shaped. I was in Room # 702, right at the point of the "V".
.JPG) |
| This is the emergency exit plan on the wall that I took the picture of. |
The door to 702 is right at the corner. The little backwards "C" is the curving staircase that leads up to the master bedroom and master bath (plus the media room, but we didn't use that). Right where the red dot for "you are here" is, well, that's the 1st floor of the suit. Upstairs, so technically on the 8th floor, was my bedroom, the master bedroom, right at the point of the V overlooking the whole valley. WOW!
Here is an outdoor shot of the Canyons Ranch Resort which we were in.
From this picture, which I copied from their website, the point of the "V", ^ right there, was where we were. The 5th, 6th and 7th floors have all windows pointing out. And above those sets of square windows is the roof gable wall of windows. THAT was my bedroom for the weekend. WOW!
Here are a few pictures of the bedroom and bathroom I had... and YES I took a bath! How could I NOT?
Yes, two window seats looking out on either side with the WALL of windows on the other wall, well minus the fireplace in the middle.
On Saturday morning, I woke up SO early. But being 2 hours behind what I was used to, I guess not too bad. Anyway, I was up for sunrise. It was foggy over the valley below. WOW, talk about breathtaking!
So its no wonder that I got to just be this weekend.
They had a nutritionist, restorative yoga class, "sex"pert, photographer, as well as giving us facials and massages. We were just treated. The only rule they had was we couldn't do anything. We weren't allowed to help. Not prep dinner, clean up, move anything. Their whole premise is to just take care of women who have gone through breast cancer, to pamper them. And pamper they did!
It was so nice to meet and bond with other women who just "get it". We could laugh together about how all of us have chemo brain (one even a full year out!). We also laughed when the "sex"pert pulled out the big purple vibrating penis. That was interesting. :)
But we also cried and supported each other. We understand each other in a way that not too many others do. Under 40, breast cancer, chemo, radiation, all the wonderful side effects associated with each.
One thing I noticed is that each of us talked of the incredible support we received, and so much from unexpected places. People we had lost touch with who came back, one was living in Germany where her husband worked. Her mom dropped everything and spent 2 months living with them in Germany to help care for her four (yes, four!) children. Another woman, her husbands coworkers sent so many meals over for them, people she didn't know! She was also breast feeding and found organizations and networks of women to donate breast milk for her son, since she was unable to breast feed while going through chemo.
We all also had those who disappointed us, or those we expected to be more supportive who just weren't. One woman said a very good friend told her, "I'm sorry, I just can't do it."
One thing that was interesting happened when we were talking about how hard it is to ask for help. We try and when we ask, it was when we REALLY needed it, since it was so hard to ask for in the first place. I shared my story.... of two people who were friends. The first email which said I only communicate when I want something, I guilt her into doing things and maybe I would get more help if I didn't ask. I also shared that the next day I was emailing with another friend when I said how depressed I was and that I was basically suicidal. The response was, "I don't want to say the wrong thing, so I will leave it there". And when I was venting about all of it, without names or specifics, on my blog, that I used to get the emotional craziness that all of us understood, out of my head, she didn't like it, copied and pasted and highlighted parts she didn't like to point out how I was wrong and then she replied to me and cc'd in another 9 people.
The first thing they told me (and after only my story of the first email) was, "You are NOT friends with this person anymore, right? OH MY GOD! She knew you were going through chemo? For breast cancer? And she STILL said all that? WOW!"
They were all completely blown away when I shared the story of the 2nd email. They understood how you don't know people until a crisis hits. It is just shocking, in good ways and in bad, who is there and who isn't or worse.
It was really nice for me to be with women who understood how I felt after both of those situations. They completely got the fear, anxiety, loneliness, stress, doubt, anger, and all the other emotions that come along with breast cancer, the treatment and the wonderful world of side effects. They understood how the 2-4am time can be the worst, the most scary time. When your biggest fears are right in your face and you are completely alone to see it all. They just got it.
We all had our different stories, different lives. One is 36, married with 4 kids, diagnosed while breast feeding her youngest. She had a bilateral with expander, then had chemo and radiation. Her swap out surgery for her permanent implants was in February. She was living in Germany when she was diagnosed and treated and but is back in the US now. She was stage II.
Another is also married, with 2 kids and she is 38 years old. She was diagnosed while she was 22 weeks pregnant with her son. She had to make the decision, within 2 weeks, if she wanted to keep the pregnancy or terminate since abortions are not allowed after 24 weeks. She started AC chemo while she was pregnant. Had her son and 2 weeks later had a single mastectomy with lymph nodes removed. Then she went through more chemo, followed by radiation which she had horrible burns from. She hasn't had any reconstruction yet. She was stage III.
One other was stage II. She had a lumpectomy without clear margins. She needed a second lumpectomy and had lymph node dissection and her port put in all during that second surgery. She is 34, single and no kids. She stayed with her parents after surgery and for a few days after each chemo treatment.
The last was with her boyfriend and has 2 children. Her daughter is 4 and her son is 1. She felt a lump while she was breastfeeding but they told her it was just because she was breastfeeding. Besides, at 31, how could it be breast cancer? Her son was 5 months by the time she was diagnosed. After her scans, they found cancer in her bones, liver and brain, along with her breast. She had chemo and stopped that for them to start radiation on her brain. Many of her tumors shrunk during chemo and none were showing on her liver when she stopped chemo. But now they are back in her breast and she is starting more chemo next week. She will be 33 in the fall and she is stage IV.
They are all beautiful, strong, compassionate, funny, courageous, loving women who are in a club that none of us wanted to join. But there we were, trading stories and tears and laughter, sitting in big fluffy white robes, relaxed and peaceful after our facials and massages passing vibrating cock rings around the room that looked out over the beautiful mountains and valley below.
I am so grateful for the weekend. For the first time in a very very long time, I felt content. There is no other word that could better describe it. I was just content. I could just be. There were no expectations on me, no where I had to be, no one I had to talk to, nothing I had to do. I could just sit and just be. I was content.
Now I want to see how I can take that feeling with me and continue to feel that way in real life, away from 7000 feet elevation, and back to my reality. I need to find a way to tap into that experience and feel that sort of peace.
Saturday morning I woke up and saw the sun rise over the mountains and sat in awe at the beauty out my windows. When the sun was up, I went into the luxurious bathroom and took a bath. While I was in there, I pulled up Enya on my playlist. Later that afternoon, while I was laying in my robe having the most incredible facial, Enya was also playing.
Now I know that going forward, whenever I hear Enya I will instantly be brought back to the mountains in Park City, Utah.
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