I just finished today with my second chemo appointment. The past two weeks since my first chemo appointment have been the roughest in my life, which is why I haven’t been able to update much.
I had my first chemo on Thursday, July 16 and felt bad that Thursday and Friday, battling nausea and fatigue. Saturday and Sunday went pretty well except for one of my anti-nausea medicines caused nerve issues (jaw tightening and swollen tongue), so they swapped it out for another drug. I thought I was going to be fine on Monday, but that’s when the pain in the right shoulder started. I also battled with nausea on Monday through Wednesday. The pain got so bad in the shoulder I ended up being hospitalized on Saturday where they diagnosed me with a blood clot in the right side of my neck. That hospital stay was way worse than any side effects from chemo – toughest three days of my life thus far.
I was discharged from the hospital Monday night and I worked from home Tuesday and Wednesday. I’ve been receiving blood thinner shots twice a day since I’ve been home. My dad had to get trained how to do it and he’s been my hero, being able to give me my shots each day.
I haven’t been alone since Saturday night. My mom was with me throughout the hospital stay, my dad stayed with me for two days, my brother spent the night with me last night (on his birthday, no less), so I’ve had a lot of help. I’ve got my mom and a girlfriend helping me this weekend through chemo and two girlfriends who are nurses who will also help administer the shots over the next week and a half. There’s a chance we will be done with the shots on Monday, so keep your fingers crossed my blood levels come back to where we can quit those. I think God is determined for me to overcome my fear of needles through this whole thing.
I know many of you have reached out to want to help, come see me, etc. Because these first two weeks were so rough, I haven’t felt good at all. I’ve needed constant help from family and close friends. My parents want me to have someone with me overnight each night until this blood clot dissolves. I hope once we get through this blood clot I will be open to having visitors. There will be plenty of time that I will want to have some company, but right now I’m not up for it as I’m just trying to focus and manage through all the symptoms being thrown at me. It amazes me how many medicines I’m taking to manage this process.
I didn’t have a chance to update you on one of my doctor’s appointment from last week. I saw my gynecological oncologist on Friday to learn more about my risk of developing ovarian cancer. He told me since I have tested positive for the BRCA-1 gene, I have a 40%-60% chance of developing ovarian cancer, depending on the study you look at. No good screening process exists for ovarian cancer. And while there is a 4 out of 5 survival rate for breast cancer, the survival rate for ovarian cancer is 1 out of 5, so all of those numbers and unknowns scared me. With all of information, I have made the decision to have the surgery to remove my ovaries and fallopian tubes next year in 2010.
I made this decision for the following reasons:
1) The percentages are too large and the screening process is not good and I don’t want to take any chances.
2) Even if my eggs do survive chemotherapy, I would want have to have my eggs genetics tested to make sure I do not pass down that gene.
3) The fact that I won’t be ready to attempt to conceive naturally by March of next year (as I have no idea who the father would be); I would be looking at an egg harvest to use my eggs at a later day. Harvesting eggs requires a large amount of hormones to be given to me during that process and medically, it isn’t in my best interest to be pumping more hormones into my body.
With my decision, here are my future reproductive options:
1) I don’t need my ovaries and uterus to carry a child, so I could carry one with a donor egg at later date – this is the least likely option to me as I’m not sure I want to put my body through a pregnancy after 40 (which is tougher on the body) especially since I would have spent the prior two years undergoing a massive amount of medical procedures/surgeries. I just think this might be too hard on my body too quickly after all is being done to it over the next two year.
2) Donor egg carried by surrogate.
3) Adoption.
The side effect of having my ovaries and fallopian tubes taken at such young age is it will put me into early menopause. Even worse is most menopause patients are given hormones to help manage their symptoms and I am not allowed to take any more hormones for the rest of my life. That will be another obstacle to overcome on the other side of this journey.
I just keep praying for some good news somewhere soon. I pray this chemo doesn’t affect my body too badly over the next week and that this blood clot heals as soon as possible – they say that is a two-three week process. I would love nothing more than to actually have a week in-between chemo appointments when I actually feel okay. I am really looking forward to the August 8 event and it would be so amazing to actually feel decent for a change. As bad as it’s been lately, I’m hoping it can only get better from here.
Thanks for keeping up with me.
Love,
Marcy
Thursday, July 30, 2009
Monday, July 27, 2009
Off to a Rough Start
The last time I updated I said I had some pain, but was managing through. However, the pain was in my upper right shoulder and got progressively worse as the week went on, so bad it hurt to move. By Friday night, I had a fever of 101.3 degrees, called the oncologist and asked him what he thought was wrong. The guess was that one of the chemo shots I get can cause bone pain.
However, by Saturday morning the pain was unbearable and I was in tears. My right arm was swollen and red, and was hotter to the touch than my left arm. We went to the emergency room at Piedmont Hospital at 2 p.m. After a battery of tests, they found a blood clot on the right side of my neck. I was sent to a room in the hospital by 8 p.m. and have been here since.
They couldn’t get my port to pull blood until yesterday, so it was a relief to learn that we can continue to use this port and we would not have to do another port surgery.
Good news is the port is working, my fever has come down and all my blood count levels have returned to normal as of this morning. I will be discharged from the hospital tonight, but I am going to have to be blood thinners through chemo now. I will be able to take the blood thinner medicine through pills for the most part, but until this blood clot dissipates, I will have to take 2 times daily blood thinner shots for the next 14 days. Right now, we are working out the issues with home health care and insurance. I think between my dad and a friend who is a nurse, we can get these shots administered for the next 14 days at 8 a.m. and 8 p.m. each day. I am still in considerable pain being managed through pain pills every four hours.
Needless to say, I did not get off to a good start on my treatment plan. The past 48 hours I have been in unbearable pain. I’m feeling better today, but moving is still difficult. When your body’s core is weak, it can be hard to move around.
I will work from home the rest of the week starting tomorrow and my doctor wants to continue on my treatment plan so I will be getting chemo this Thursday as scheduled. I’m not rested and really not up for it, but I have to get better.
I’m still not up for phone calls or visitors as I still need to heal. Respond to this thread or via a FB message, but after I type this, I’m logging off the computer to rest and won’t be on it until tomorrow.
I wanted you to know why I’ve been MIA for several days now, but it has be a rough go of it the past three days.
Thanks for your love and concern,
Marcy
However, by Saturday morning the pain was unbearable and I was in tears. My right arm was swollen and red, and was hotter to the touch than my left arm. We went to the emergency room at Piedmont Hospital at 2 p.m. After a battery of tests, they found a blood clot on the right side of my neck. I was sent to a room in the hospital by 8 p.m. and have been here since.
They couldn’t get my port to pull blood until yesterday, so it was a relief to learn that we can continue to use this port and we would not have to do another port surgery.
Good news is the port is working, my fever has come down and all my blood count levels have returned to normal as of this morning. I will be discharged from the hospital tonight, but I am going to have to be blood thinners through chemo now. I will be able to take the blood thinner medicine through pills for the most part, but until this blood clot dissipates, I will have to take 2 times daily blood thinner shots for the next 14 days. Right now, we are working out the issues with home health care and insurance. I think between my dad and a friend who is a nurse, we can get these shots administered for the next 14 days at 8 a.m. and 8 p.m. each day. I am still in considerable pain being managed through pain pills every four hours.
Needless to say, I did not get off to a good start on my treatment plan. The past 48 hours I have been in unbearable pain. I’m feeling better today, but moving is still difficult. When your body’s core is weak, it can be hard to move around.
I will work from home the rest of the week starting tomorrow and my doctor wants to continue on my treatment plan so I will be getting chemo this Thursday as scheduled. I’m not rested and really not up for it, but I have to get better.
I’m still not up for phone calls or visitors as I still need to heal. Respond to this thread or via a FB message, but after I type this, I’m logging off the computer to rest and won’t be on it until tomorrow.
I wanted you to know why I’ve been MIA for several days now, but it has be a rough go of it the past three days.
Thanks for your love and concern,
Marcy
Tuesday, July 21, 2009
I Wish I Could Eat!
I’ve been back at work yesterday and today and been up and down energy wise. I felt a bit better today than I did yesterday, so I can only hope to think it will improve in between chemo treatments. Lord, I need to at least have to hope that it does so I have something to hold on to in between sessions.
I met with my breast surgeon yesterday – first time since I got the BRCA gene test results. Since I tested positive, it has changed the course of treatment after chemo. My doctor said two to four weeks after my chemo ends, she will perform a skin-saving mastectomy. This will require me to be it the hospital 1-2 days, recovery for a week, then back to about 90% after two weeks. At that time, they would put in extenders to stretch my skin and what surprised me most, is she said depending on my reconstructive surgeon, it could be three months to one year before they do the reconstructive surgery. That bummed me out – I didn’t think it would be that long of a process. After the mastectomy, I will have to have six weeks (30 days) of radiation for 10-15 minutes a day. My doctor said that I can work throughout that, but for the second half, I would probably be real tired.
I’m struggling with food. Who knew, me? The girl who used to love to eat?! I’m having a hard time keeping things down – threw up twice today. As much as my mom is trying to have me eat healthy, I’ve quickly learned that I need to eat food no matter what I can get down. This is a new process I’m learning and it isn’t fun. I’ve already lost 12 pounds and as cool as it would be to get super-skinny, I don’t think that’s in my best interest right now. Gatorade is my new friend (Shoot, am I going to get in trouble with a sponsor mention that it’s not a Coca-Cola product? Grin).
Thanks again for everyone’s love, support and words of encouragement. I still continue to be humbled by all the outreach and desire to help. It brings me to tears when I let it sink in.
Next up this week is an appointment with the gynecological oncologist on Friday to discuss next steps in preventing the ovarian cancer risk I possess. I will also be getting one of my wigs on Saturday, so let’s hope it looks good.
With much love,
Marcy
I met with my breast surgeon yesterday – first time since I got the BRCA gene test results. Since I tested positive, it has changed the course of treatment after chemo. My doctor said two to four weeks after my chemo ends, she will perform a skin-saving mastectomy. This will require me to be it the hospital 1-2 days, recovery for a week, then back to about 90% after two weeks. At that time, they would put in extenders to stretch my skin and what surprised me most, is she said depending on my reconstructive surgeon, it could be three months to one year before they do the reconstructive surgery. That bummed me out – I didn’t think it would be that long of a process. After the mastectomy, I will have to have six weeks (30 days) of radiation for 10-15 minutes a day. My doctor said that I can work throughout that, but for the second half, I would probably be real tired.
I’m struggling with food. Who knew, me? The girl who used to love to eat?! I’m having a hard time keeping things down – threw up twice today. As much as my mom is trying to have me eat healthy, I’ve quickly learned that I need to eat food no matter what I can get down. This is a new process I’m learning and it isn’t fun. I’ve already lost 12 pounds and as cool as it would be to get super-skinny, I don’t think that’s in my best interest right now. Gatorade is my new friend (Shoot, am I going to get in trouble with a sponsor mention that it’s not a Coca-Cola product? Grin).
Thanks again for everyone’s love, support and words of encouragement. I still continue to be humbled by all the outreach and desire to help. It brings me to tears when I let it sink in.
Next up this week is an appointment with the gynecological oncologist on Friday to discuss next steps in preventing the ovarian cancer risk I possess. I will also be getting one of my wigs on Saturday, so let’s hope it looks good.
With much love,
Marcy
Sunday, July 19, 2009
Chemo Update
I’ll be honest, I’m really not inspired to write right now, but felt like I should update on my chemo progress.
Thursday was my chemo session and I think I ate too heavy of a dinner on Thursday night, so I was really nauseous. Bad nausea. But I recovered. It wasn’t fun though and I didn’t sleep well that night.
Friday I was really tired. Couldn’t keep my eyes opened, but I was able to get some work done, but that was about it.
Saturday, I felt great. Caught up on the work I couldn’t get done on Friday and was feeling pretty good. Including walks twice a day – not long, but good enough. My biggest frustration was a swollen tongue. My doctor wasn’t sure what the deal was so I took Benadryl and it helped.
Today I still struggled with the swollen tongue. My doctor switched my nausea medicine from Composine to Zofran, and I think it has helped from the tongue standpoint. Chewing gum seems to help unlock the jaw and help with the tongue. I’m bored mostly. I want to be doing things and hate to rest. Played yahtzee with my mom a lot. Took more walks. Went to Old Navy today and got a few things. But I am real bored. Don’t want to nap anymore, but can’t do much else. Watching a few movies and mom cooked all day to make my meals for the week. I love her so much for taking care of my diet.
Back to work tomorrow, so hopefully, I will be okay. Early morning appointments tomorrow – echocardiogram first, then meeting with my breast surgeon about the mastectomy and reconstruction after chemo.
Sorry this isn’t my most informative blog, but at least it catches you up if you are interested in catching up with me.
Love,
Marcy
Thursday was my chemo session and I think I ate too heavy of a dinner on Thursday night, so I was really nauseous. Bad nausea. But I recovered. It wasn’t fun though and I didn’t sleep well that night.
Friday I was really tired. Couldn’t keep my eyes opened, but I was able to get some work done, but that was about it.
Saturday, I felt great. Caught up on the work I couldn’t get done on Friday and was feeling pretty good. Including walks twice a day – not long, but good enough. My biggest frustration was a swollen tongue. My doctor wasn’t sure what the deal was so I took Benadryl and it helped.
Today I still struggled with the swollen tongue. My doctor switched my nausea medicine from Composine to Zofran, and I think it has helped from the tongue standpoint. Chewing gum seems to help unlock the jaw and help with the tongue. I’m bored mostly. I want to be doing things and hate to rest. Played yahtzee with my mom a lot. Took more walks. Went to Old Navy today and got a few things. But I am real bored. Don’t want to nap anymore, but can’t do much else. Watching a few movies and mom cooked all day to make my meals for the week. I love her so much for taking care of my diet.
Back to work tomorrow, so hopefully, I will be okay. Early morning appointments tomorrow – echocardiogram first, then meeting with my breast surgeon about the mastectomy and reconstruction after chemo.
Sorry this isn’t my most informative blog, but at least it catches you up if you are interested in catching up with me.
Love,
Marcy
Wednesday, July 15, 2009
The Big Drop of the Rollercoaster
So as soon as I hit the “update blog” button on Monday, my phone rang. It was the genetics counselor with my test results for the BRCA gene. This test would tell me if my breast cancer was passed down genetically. Unfortunately, I tested positive for the BRCA-1 gene. It was probably the second time I’ve really come unglued emotionally through this whole process. This was not the result I wanted and also why I haven’t updated the blog in two days. I haven’t been able to stomach it yet.
You may not know what testing positive for this means. Here’s how I can best explain it:
• The general population has an 8-10% risk of developing breast cancer.
• If you have this gene, you have an 87% risk of developing breast cancer and a 44% chance of developing ovarian cancer.
• Since I have already been diagnosed with breast cancer, I now have a 40% chance of developing breast cancer within ten years of this first diagnosis.
What does that mean for me now in my course of treatment?
Instead of having a lumpectomy and radiation following my chemo, I will have to have a bilateral mastectomy, where they take every inch of my breast tissue on my body. There is no reason to chance developing breast cancer again since 40% is such a high percentage. They have recommended I start shopping plastic surgeons now for my breast reconstruction. I’m meeting with my breast surgeon Monday to find out if it is going to be a two-part surgery or if it can be done all at once and to get referrals for plastic surgeons.
I also have to meet with a gynecological oncologist to get an ovarian cancer screening next Friday. I will continue to get screened every six months until I decide to let them take my ovaries and fallopian tubes, especially since the screening for ovarian cancer has a high false positive rate. They suggest having the surgery after age 35 of whenever I’m done giving birth to my children.
So this further complicates my fertility issues and decisions I have to make quickly about my desire to give birth to my own children. Is it worth trying to go through all the fertility options with such a high risk of ovarian cancer? Are my eggs even salvageable? If they are, I have to test them for this gene so I don’t pass it on to my children. If I do opt for the surgery early for the fallopian tubes and ovaries, that will put me into early menopause. Who wants to be going through menopause in their 30’s? It is medically possible to carry an implanted embryo without your ovaries and fallopian tubes and I could also adopt, so there are other options if I choose to have the surgery soon. But I’m having to make all these decisions without a husband and I don’t exactly see me getting married over the next year.
Regardless, a 44% chance of ovarian cancer is sizeable, so whatever I do, I need to make some major decisions quickly and it is tough making them on your own and not knowing what your future holds.
I am beyond overwhelmed with emotions and decisions. I had no idea it could get any worse than being diagnosed with cancer, but it has. This is too much to tackle at once and there are so many decisions that have to be made in such a short time. This is the first week where I feel I’ve really hit rock bottom and can’t seem to kick myself in the ass to be positive. I’ve been given great advice to only take on what’s in front of me, but those of you that know me well, know what a planner I am. It’s hard to not think about what’s next.
I even got spectacular news today from the PET scan. The scan showed that the cancer is only in the source of origin spot in my breast and the one underarm area. I should be overjoyed. I should be celebrating that the cancer didn’t spread and I can beat it. But I’m not. I’m mourning right now. All the things that are waiting for me on the other side of chemo aren’t great. This is a LONG road ahead of me and a very scary one at that. I know I’m not the first person to ever go through this experience and certainly won’t be the last, but it is the worst thing I have ever experienced and I can’t understand why God would put even one person through this, let alone the masses that have gone before me.
I always knew cancer was a scary word, but never did I realize the depths until I’m wading through the muck of it all. It is certainly a roller coaster ride and this is one of the really low points.
My first chemo treatment is tomorrow and I’m scared. I have an overwhelming fear of needles and I know I will have at least three shots tomorrow. Most importantly, I’m scared of how my body will react to the chemo. It is all the fear of the unknown.
I’m sorry I don’t have a more positive post for you and sorry I’ve sat on this news for a few days, but I just haven’t had the heart to write it.
I know some of you have been asking about the August 8 benefit that is being thrown in my honor. I’ll be honest; I wasn’t up for it at first. I don’t like being the center of attention – I was the girl that never wanted a formal wedding because I’m uncomfortable with it being “all about me.” It is also feels somewhat shameful to admit that I need help. In fact, I got the bill from my July 7 surgery today – it was $29,872. Granted that hasn’t been submitted to insurance yet, but if that is just for one day’s service, I have no idea what I’m in for financially during this process. I’m so used to taking care of myself that this has also been challenging for me to say I need help. There have been so many people who have wanted to help me in some way, but haven’t known how. I think this benefit may be the best answer. Hopefully, a lot of people will come out and we’ll have a great night. It is actually the only thing I’m looking forward to at this point.
Thank you for your love, support and words of encouragement. I’m not sure when I’ll post again, but wish me luck and pray that my body will handle the chemo as best as we can hope for.
With love,
Marcy
You may not know what testing positive for this means. Here’s how I can best explain it:
• The general population has an 8-10% risk of developing breast cancer.
• If you have this gene, you have an 87% risk of developing breast cancer and a 44% chance of developing ovarian cancer.
• Since I have already been diagnosed with breast cancer, I now have a 40% chance of developing breast cancer within ten years of this first diagnosis.
What does that mean for me now in my course of treatment?
Instead of having a lumpectomy and radiation following my chemo, I will have to have a bilateral mastectomy, where they take every inch of my breast tissue on my body. There is no reason to chance developing breast cancer again since 40% is such a high percentage. They have recommended I start shopping plastic surgeons now for my breast reconstruction. I’m meeting with my breast surgeon Monday to find out if it is going to be a two-part surgery or if it can be done all at once and to get referrals for plastic surgeons.
I also have to meet with a gynecological oncologist to get an ovarian cancer screening next Friday. I will continue to get screened every six months until I decide to let them take my ovaries and fallopian tubes, especially since the screening for ovarian cancer has a high false positive rate. They suggest having the surgery after age 35 of whenever I’m done giving birth to my children.
So this further complicates my fertility issues and decisions I have to make quickly about my desire to give birth to my own children. Is it worth trying to go through all the fertility options with such a high risk of ovarian cancer? Are my eggs even salvageable? If they are, I have to test them for this gene so I don’t pass it on to my children. If I do opt for the surgery early for the fallopian tubes and ovaries, that will put me into early menopause. Who wants to be going through menopause in their 30’s? It is medically possible to carry an implanted embryo without your ovaries and fallopian tubes and I could also adopt, so there are other options if I choose to have the surgery soon. But I’m having to make all these decisions without a husband and I don’t exactly see me getting married over the next year.
Regardless, a 44% chance of ovarian cancer is sizeable, so whatever I do, I need to make some major decisions quickly and it is tough making them on your own and not knowing what your future holds.
I am beyond overwhelmed with emotions and decisions. I had no idea it could get any worse than being diagnosed with cancer, but it has. This is too much to tackle at once and there are so many decisions that have to be made in such a short time. This is the first week where I feel I’ve really hit rock bottom and can’t seem to kick myself in the ass to be positive. I’ve been given great advice to only take on what’s in front of me, but those of you that know me well, know what a planner I am. It’s hard to not think about what’s next.
I even got spectacular news today from the PET scan. The scan showed that the cancer is only in the source of origin spot in my breast and the one underarm area. I should be overjoyed. I should be celebrating that the cancer didn’t spread and I can beat it. But I’m not. I’m mourning right now. All the things that are waiting for me on the other side of chemo aren’t great. This is a LONG road ahead of me and a very scary one at that. I know I’m not the first person to ever go through this experience and certainly won’t be the last, but it is the worst thing I have ever experienced and I can’t understand why God would put even one person through this, let alone the masses that have gone before me.
I always knew cancer was a scary word, but never did I realize the depths until I’m wading through the muck of it all. It is certainly a roller coaster ride and this is one of the really low points.
My first chemo treatment is tomorrow and I’m scared. I have an overwhelming fear of needles and I know I will have at least three shots tomorrow. Most importantly, I’m scared of how my body will react to the chemo. It is all the fear of the unknown.
I’m sorry I don’t have a more positive post for you and sorry I’ve sat on this news for a few days, but I just haven’t had the heart to write it.
I know some of you have been asking about the August 8 benefit that is being thrown in my honor. I’ll be honest; I wasn’t up for it at first. I don’t like being the center of attention – I was the girl that never wanted a formal wedding because I’m uncomfortable with it being “all about me.” It is also feels somewhat shameful to admit that I need help. In fact, I got the bill from my July 7 surgery today – it was $29,872. Granted that hasn’t been submitted to insurance yet, but if that is just for one day’s service, I have no idea what I’m in for financially during this process. I’m so used to taking care of myself that this has also been challenging for me to say I need help. There have been so many people who have wanted to help me in some way, but haven’t known how. I think this benefit may be the best answer. Hopefully, a lot of people will come out and we’ll have a great night. It is actually the only thing I’m looking forward to at this point.
Thank you for your love, support and words of encouragement. I’m not sure when I’ll post again, but wish me luck and pray that my body will handle the chemo as best as we can hope for.
With love,
Marcy
Monday, July 13, 2009
Some Test Results In
I just received a call from my doctor this morning. She received the results of the biopsy on Friday. She says I have invasive ductal carcinoma, which is the most common form of breast cancer. The biopsy from Friday confirmed the cancer originated in the breast. The biopsy from Tuesday confirmed it traveled outside the area of origin into the lymph nodes. We did a PET scan this morning to determine if it has traveled through the lymph system to any other areas of the body. She feels we only have a 10% chance that it has traveled further and feels pretty good we are just dealing with the breast area and the lymph area underneath my armpit. They should have the PET scan results in two days. Let’s keep our fingers crossed.
She also received the results from the receptor study and it is triple negative breast cancer, which means it came back negative for the estrogen, progesterone and HER2.
Next up is my first chemotherapy treatment which is this Thursday, July 16. I will be receiving treatments every other Thursday for the next four months (eight treatments total). I will work from home those Fridays following chemo to rest my body (as they say if you overdo it the day after chemo, you will pay for it the following day). I hope that means my bad days will fall on Saturday and Sunday, which sounds pretty typical.
For those of you that want more details, here is what I will be getting when I go to my chemo treatments:
1) First, they access my port, flush it out and take vitals.
2) Then they put in the primary bag of saline.
3) Next they give me an anti-nausea drug, followed by Decadron, which is a steroid and anti-nausea medicine.
4) The first chemo drug I receive is Adriamycin for 10-20 mins. This drug is to fight the cancer by stopping the growth of cancer cells in the body.
5) The second chemo drug is Cytoxin for 1 hour. It is also a drug which fights the cancer by stopping the growth of cancer cells in the body, causing the cancer to die.
6) The final thing they do to me is give me a shot for Neulasta, which is a drug that helps my bone marrow produce more white blood cells to help my body fight infection. This is to help me not become anemic.
7) Lastly, they flush the port, and send me home. All in all, this takes about 3 hours.
The only other test scheduled is for Monday, July 20 and it is an echocardiogram on my heart. My oncologist wants to get a baseline of my heart before the chemo starts to weaken it.
So, all we are waiting on now is the PET scan result and the genetics study, which should both be back this week. Thank you for all the prayers and let’s hope both of those come back with negative readings.
She also received the results from the receptor study and it is triple negative breast cancer, which means it came back negative for the estrogen, progesterone and HER2.
Next up is my first chemotherapy treatment which is this Thursday, July 16. I will be receiving treatments every other Thursday for the next four months (eight treatments total). I will work from home those Fridays following chemo to rest my body (as they say if you overdo it the day after chemo, you will pay for it the following day). I hope that means my bad days will fall on Saturday and Sunday, which sounds pretty typical.
For those of you that want more details, here is what I will be getting when I go to my chemo treatments:
1) First, they access my port, flush it out and take vitals.
2) Then they put in the primary bag of saline.
3) Next they give me an anti-nausea drug, followed by Decadron, which is a steroid and anti-nausea medicine.
4) The first chemo drug I receive is Adriamycin for 10-20 mins. This drug is to fight the cancer by stopping the growth of cancer cells in the body.
5) The second chemo drug is Cytoxin for 1 hour. It is also a drug which fights the cancer by stopping the growth of cancer cells in the body, causing the cancer to die.
6) The final thing they do to me is give me a shot for Neulasta, which is a drug that helps my bone marrow produce more white blood cells to help my body fight infection. This is to help me not become anemic.
7) Lastly, they flush the port, and send me home. All in all, this takes about 3 hours.
The only other test scheduled is for Monday, July 20 and it is an echocardiogram on my heart. My oncologist wants to get a baseline of my heart before the chemo starts to weaken it.
So, all we are waiting on now is the PET scan result and the genetics study, which should both be back this week. Thank you for all the prayers and let’s hope both of those come back with negative readings.
Saturday, July 11, 2009
New Do
So I got my new haircut today and I’ll have it three weeks before my hair falls out. This is the shortest I’ve had it since I was four years old. I was proud of myself – didn’t cry at all. If you are my Facebook friend, I added two picture galleries – one of the new haircut and one of wig shopping. Let’s just say, I was never meant to be a blond, so have a good laugh at those!
I was also able to donate my hair to Locks of Love. They do not require donations to be a minimum of 10 inches anymore. They can use shorter pieces and I will have seven inches to donate.
Wig shopping was interesting. My mom and one of my best friends came along with me and we played around with many wigs and had some good laughs. While trying on the wigs, I had to put on a wig cap to hold my hair down – it was skin colored, so it was the first time I could imagine myself bald. I didn’t get upset, but it did bother me.
I’m still not sure about the whole wig thing and how it will look, but I received a human hair wig as a gift and my parents are going to buy me a synthetic one as well. I think I’ll just have to wait and see what I feel best in when my hair is gone. Nothing yet has felt quite like “me.”
At least I had some fun today and made the most of the situation.
Thanks for following along!
Love,
Marcy
Frustrated
I received a call yesterday from the nurse assigned to me at Piedmont. She called me to confirm an appointment at the wellness center, and the she told me, that I was the patient of the day discussed at Piedmont’s Tumor Board. Each week all the oncologists, lymphatic specialists and doctors get together to discuss a case (my name was never mentioned, but the nurse knew it was me due to the “dove bar” underneath my arm). It is nice to know that there were lots of people interested in my case and many doctors able to give insight. They determined my case “special” due to the way my cancer presented itself. It didn’t present itself in a tumor. The mass was deep in my breast and kept expelling the bad cells, to which the lymph node under my arm kept catching. It was doing its job – to capture waste and process it through the lymph system. However, this lymph node did such a great job catching the cells, which is why it grew so big. A lymphatic specialist now wants to meet with me to understand the size of the lymph node and how it impacted all the arm pain I was having.
Anyway, now the doctors aren’t sure if any of the cancer has escaped to the lymph system, so I have to have what’s called a PET SCAN Monday morning. It’s a full body scan to make sure the cancer hasn’t spread elsewhere and I’m not Stage 4 – only Stage 3 as they have hoped.
My first visit yesterday was to my breast surgeon. She did another biopsy in her office on the area of origin. I won’t lie – it hurt like hell. Felt like she was bearing down right into my chest. I cried of course.
Next was the visit to the oncologist. Where we are both frustrated is the receptor study results are still not back from the lab in California. These results determine what type of chemo drugs I get and how often. My doctor says he does not expect the results to come back positive from those, just due to the fact that only 15% of people come back with positive readings.
With that, he has outlined a course of treatment for me with the exception that if the receptor studies come back positive, he will change the course. He should know those results Monday or Tuesday at the latest.
Next steps are the PET SCAN Monday and the next Monday they want to do a baseline echogram of my heart because the cancer drugs can weaken the heart muscles.
My chemo treatments will be the following (as long as the receptor studies come back negative): once every two weeks for four months, changing the mix of drugs halfway. I will start my first chemo treatment on Thursday, July 16. My doctor feels assured that my toughest days will be the second and third day after chemo. So on my weeks I have chemo, I will have them on Thursday afternoons, work from home on Fridays (just to rest my body as much as possible), then my bad days should be that Saturday and Sunday, so I can be ready for the next work week ahead. I want to continue to work during this process. I know my energy will be lower and I know I won’t be able to do all the overtime hours I used to, but it’s important to me to keep working. I love my job and think it will be a good distraction for me and something else to focus on.
I will listen to my body and try to bring my lunch each day and nap for 30-45 minutes where I had used to go out to lunch. My mom went to the nutritionist this week and we cleaned out my pantry and refrigerator last night. There will be only healthy eating for me the next four months and probably little to no eating out. Trying to avoid any processed foods and eat as organic as possible. I got upset a little bit checking out of the store last night as my buggy was full of crap I’ve never bought before. And let me tell you, the healthy organic food never goes on sale so my bill was pretty high.
I cried before bed last night. Just overwhelmed at how much my life is changing and how much I will be losing in this process. I’m proud of myself for the positive attitude I’ve had most days, but some days it is too much to process – between the two doctors visits, the biopsy that hurt, the unanswered receptor study, having to do two more tests and the changes in my kitchen, it just overwhelmed me to tears.
Today is the shorter hair cut and visits to two wig shops. Hopefully, I will find something I like.
I’ve also had people ask if I had a registry somewhere. I registered for a few things on http://www.headcovers.com/. You have to enter in my first and last name, plus my email address, which I used the marcylscott@gmail.com address.
On a funny note, a few of my high school girlfriends came over and brought me dinner on Thursday night. Beth showed up in a trench coat and said she had surprise for me. She threw the jacket off and underneath she was dressed in our Trickum Middle School cheerleading uniform. The wench can still fit into it – barely, but she got it buttoned, so props to her. We all had a big laugh. They were so sweet – kept my mind off things and was a fun evening of laughing and reminiscing. (see photo above).
Also, save the date – August 8. I’ve got some great friends working on a fundraiser in my honor to help with my medical expenses and what I can’t use will be donated to breast cancer research. It will be called “Think Pink” and is being held at Opera. Michelle Muessle-Dauble is spearheading this along with many others, so I am very grateful. I wasn’t for it at first, as I don’t like to be the center of attention for anything, but have come to realize that I need help and have many people in my life who want to help in some way and this hopefully will be a fun and positive event for all. So be looking for a pink outfit – I think a prize will be give for the best one. I’m actually looking really forward to it now and hope to get to see many of my friends there.
I will post a picture of the new haircut later.
Thanks for all your love and support!
With love,
Marcy
Thursday, July 9, 2009
First bit of good news…
I got a call from my breast surgeon yesterday afternoon. She received the results of my MRI. The feel they know the probable source of origin of my cancer now. It is a 2.6cm (over 1 inch) place that is in the left breast, lower 6 o’clock area (like if you were looking at the face of a clock). She said it is very deep in there and was not picked up in the mammogram as it would have been squeezed into the chest wall. The good news is that they do not believe it to be in the lymph nodes and is contained in the breast AND that after chemo, they believe it can be completed with a lumpectomy and radiation, so I would not require a mastectomy. The only way I would lose my breasts now is if the genetics test comes back positive read for the BRAC gene. Let’s keep our fingers crossed for that to come back negative next week. I have to go back to my breast surgeon on Friday for another biopsy of that source of origin area now. I guess God is determined to make me overcome my fear of needles, so I will get stuck again – UGH! Thanks for all the prayers and support. It must be working as I am so relieved for this first bit of good news. Let’s hope we continue to get better news each day!
With love,
Marcy
With love,
Marcy
Wednesday, July 8, 2009
Ouch!
Yesterday was the surgery to put in my port for chemotherapy treatments and another needle biopsy, followed by a MRI.
I arrived at the hospital at 6 a.m. with two of my close girlfriends who both have nursing degrees and work in different capacities in the medical field. They kept me talking and laughing trying to keep me occupied before the procedure.
A nurse came to get me to take me back to get prepped for surgery. When she told me to put on the gown, I started crying. At that point, it all sunk in that this is the start of the long road ahead of me and it all became overwhelming; plus I had never had major surgery like this before. They started the IV quickly and gave me something to calm down. I was told I was a chatterbox from there. I got to see my mom, dad, brother and two friends before they started the procedure. I remember getting wheeled back to the surgery room and talking to my surgeon for a bit, but after that, nothing else.
I woke up in recovery with a really sore throat and the side where they did the biopsy was hurting like mad. I really didn’t feel anything much where they put the port in. Drank some ginger ale and ate some Italian ice for the throat and they gave me pain meds and anti-nausea meds too.
My MRI was originally scheduled for 4 p.m., but the nurses called and got me worked in at 12:30 p.m., so I went straight from recovery to the MRI. I was scared, dry heaved a bit, but once settled in the machine, it was fine. It only lasted about 30 minutes.
Following the MRI, I was discharged and sent home. Mom stayed the night with me and I rested a ton. I ate chicken noodle soup, crackers and Jello all while my stomach was doing somersaults and back flips. I also had an anesthesia hangover (really bad headache).
Mom took great care of me last night and this morning and sent me off to work driven by a co-worker that lives nearby. I’m feeling as best that could be expected today, but trying to take it easy.
Mom has a meeting today with the nutritionist to make sure I will be eating right prior to and after the chemo treatments and preparing my body for it as best we can.
Best news I’ve received all week, is a friend of mine wears a wig full time due to losing her hair years ago. I never knew her hair wasn't real, as she has the most beautiful head of hair. She said she has gotten a free one in a package she had bought and wouldn’t be able to use it, so she is donating that free one to me. I bawled my eyes out by her generosity.
Next big step is Friday, July 10 with the oncologist. At that point, all the results of yesterday’s tests will be in and a course of treatment will be unveiled, so all we can do now is wait. My breast surgeon said that my oncologist might even start chemo Friday afternoon, but if he didn’t, I could plan on it starting Monday, July 13. I’ll keep you in the loop with Friday's results.
Again, I cannot say enough about Piedmont Hospital and the staff there. Each and every medical professional I encountered was kind and helpful and really seemed to care. I couldn’t say thank you enough to every person that helped me.
Thanks to you for all your love and support, and keep praying for positive test results on Friday!
With love,
Marcy
I arrived at the hospital at 6 a.m. with two of my close girlfriends who both have nursing degrees and work in different capacities in the medical field. They kept me talking and laughing trying to keep me occupied before the procedure.
A nurse came to get me to take me back to get prepped for surgery. When she told me to put on the gown, I started crying. At that point, it all sunk in that this is the start of the long road ahead of me and it all became overwhelming; plus I had never had major surgery like this before. They started the IV quickly and gave me something to calm down. I was told I was a chatterbox from there. I got to see my mom, dad, brother and two friends before they started the procedure. I remember getting wheeled back to the surgery room and talking to my surgeon for a bit, but after that, nothing else.
I woke up in recovery with a really sore throat and the side where they did the biopsy was hurting like mad. I really didn’t feel anything much where they put the port in. Drank some ginger ale and ate some Italian ice for the throat and they gave me pain meds and anti-nausea meds too.
My MRI was originally scheduled for 4 p.m., but the nurses called and got me worked in at 12:30 p.m., so I went straight from recovery to the MRI. I was scared, dry heaved a bit, but once settled in the machine, it was fine. It only lasted about 30 minutes.
Following the MRI, I was discharged and sent home. Mom stayed the night with me and I rested a ton. I ate chicken noodle soup, crackers and Jello all while my stomach was doing somersaults and back flips. I also had an anesthesia hangover (really bad headache).
Mom took great care of me last night and this morning and sent me off to work driven by a co-worker that lives nearby. I’m feeling as best that could be expected today, but trying to take it easy.
Mom has a meeting today with the nutritionist to make sure I will be eating right prior to and after the chemo treatments and preparing my body for it as best we can.
Best news I’ve received all week, is a friend of mine wears a wig full time due to losing her hair years ago. I never knew her hair wasn't real, as she has the most beautiful head of hair. She said she has gotten a free one in a package she had bought and wouldn’t be able to use it, so she is donating that free one to me. I bawled my eyes out by her generosity.
Next big step is Friday, July 10 with the oncologist. At that point, all the results of yesterday’s tests will be in and a course of treatment will be unveiled, so all we can do now is wait. My breast surgeon said that my oncologist might even start chemo Friday afternoon, but if he didn’t, I could plan on it starting Monday, July 13. I’ll keep you in the loop with Friday's results.
Again, I cannot say enough about Piedmont Hospital and the staff there. Each and every medical professional I encountered was kind and helpful and really seemed to care. I couldn’t say thank you enough to every person that helped me.
Thanks to you for all your love and support, and keep praying for positive test results on Friday!
With love,
Marcy
Friday, July 3, 2009
How is it that I feel blessed?
Even though I’m going through this hellish process, I’m blown away about how blessed I am.
Between my family, friends, my work family at AMS, the Atlanta sports media community and being a part of the NASCAR community, I am astounded at how much love and support I have right now. All I can think about is the people who go through something like this and do not have the network of support that I do. I cannot imagine facing this and feeling alone without any assistance.
Thank you to everyone who has sent me an email or post of support. This has given me more strength than you will ever know. I am also touched by how many of you have been impacted by cancer in your life – yourself, a family member or a friend. I have also had quite a few people reach out to offer advice for those that have gone through this. Thank you and I may reach out in the future, but right now I’m getting all the information I can about the next few weeks ahead from my doctors. I’m not sure I want to jump too far ahead learning about this road I have in front of me the next few months. I am already scared enough and processing so much information right now. In some ways, ignorance is bliss. I can’t imagine having more to worry about that isn’t right in front of me. This will be a long journey and I’m sure there will be time to connect.
I’m also so impressed with the cancer program at Piedmont Hospital. I swear, everyone there must have to pass some type of kindness test in order to work there. I have a nurse that is dedicated to me and my time with her does not get billed to my insurance program. They have a wellness center that provides counseling services, a nutritionist, yoga classes, acupuncture, massage, cooking classes, resources classes all for free for cancer patients. I am blown away by all they provide and all of this is provided by grants from the Susan G. Komen foundation and the American Cancer Society mostly, I believe. So for any of you that donate to those organizations – THANK YOU! I cannot tell you how wonderful that resource is – it is such a comfort. I signed up for a class that will provide beauty techniques to battle the side effects of chemo. I didn’t realize that I won’t be able to use many of the beauty products I use now. My bathroom is going to have to undergo a complete overhaul.
Yesterday was a good news/bad news day.
The good news:
1) Talked to the nurse I mentioned above and she was AMAZING. I was able to ask her the myriad of questions. She informed me that if my biopsy comes back with a positive reading for the HER2, that is the chemo that I will have to undergo once a week. Please pray for that to come back negative. She said if I do not have that, then I should expect to have chemo treatments every two to three weeks. She suggested after my first chemo treatment, to set aside the whole next week off work, as I won’t be able to know which day will be my “bad” day. She said for some people it is day 2, for some day 5, but the good news is that once I find what my “bad” day will be, that I can predict that to be my bad day going forward. That if I get sick on day 5, it will always be day 5, so that’s good news. She also assured me that this time I’m going through right now is the worst time, just because there is still so much unknown. That once I get through this, that I can finally figure out what my new “normal” would be. She said it won’t be fun, but it will be predictable, so I can try to lead as normal I life I can. That this is my hell period right now, so I have hope that it won’t be worse than this – thank God, because it is bad.
2) I was also told that one of my coworker’s wife is a nurse where I am having my surgery Tuesday, so he promised she would take good care of my and my family/friends, so that was very comforting.
For the bad news:
1) When I went to go make my appointment with the wig person, I was informed my insurance does not provide wigs for cancer patients. The wigs can run $450-$650 for synthetic and human hair wigs start at $1,000. Tracy Carmony with WXIA-TV has offered to coordinate putting a fund together for anyone wanting to help donate and her email address is tcarmony@wxia.gannett.com.
As I’m gathering all this information, here are the biggest hurdles I have coming up:
1) July 7 – port surgery, biopsy and MRI
2) July 10 – meeting with the oncologist to determine what kind of cancer I have and the treatment plan
3) Week of July 13 – first chemo treatment (and learning what my bad day will be)
4) Week of July 13 – results from genetics testing that will let me know if I have to have a double mastectomy and removal of ovaries/fallopian tubes at the end of this road
5) Between July 30 through August 3 – losing my hair
I hope that once I get through this time period, I hope to be able to find my “new” normal. I hope to be able to return to doing things with friends and I’m sure at that time my close friends and family will enjoy taking a break and letting someone else occupy some of my time socially. Just know that this first month is tough and it is overwhelming just keeping my close circle informed.
I am also proud of myself. If you know me well, you know I pride myself of being a strong, independent person. I have realized now that I have to give things away and focus all my energy on getting well. I have turned my diet over to my mother. I will let her make all my meals and make sure that I’m eating the foods the nutritionist outlines. She will also be cleaning my house. I’ve turned all my indoor and outdoor plants to my best friend who lives next door. I’ve asked another friend to educate herself and teach me how to tie head scarves. So I’m learning to ask for help and give up control. For those of you that know me well, you can laugh now. I now don’t care how the dishes are put in the dishwasher, where things go in the refrigerator, how the towels are folded or where things get put away. It really doesn’t matter much anymore – I’m just thankful for the help.
As for how I feel? I’m still in a bit of pain. My left arm now aches all the way to my fingertips and the pain medicine isn’t much help. I’m actually looking forward now to the first chemo treatment so it can be shrunk and get some relief. Also, the nausea hasn’t gone away. I don’t feel like eating and have to force myself to eat. I’ve lost seven pounds in five days. Mornings seem to be the worst. Since Saturday night, I haven’t been sleeping at all. Usually on 2-3 hours a night. Fortunately, I think the exhaustion set in as I went to bed at 9:30 p.m. last night and slept until 6:00 a.m. this morning. This morning was also positive. It didn’t have as hard a time getting ready. The past few days, it has been heartbreaking getting ready each morning. Crying in the shower. Hating myself looking in the mirror because I’m unsure of what I will look like a month from now. Styling my hair has been the worst – it isn’t fun anymore; it is heartbreaking. The best analogy I can give you is someone trying to kiss you that you know is breaking up with you in a month. How can I love something anymore that I know is going to let me down soon in a really big way?
I’m trying to keep busy – work, time with friends and trying to rest are helping right now. I’m just trying to keep my mind occupied until Tuesday next week which will be a rollercoaster.
Many of you have asked for my home address. If you are my Facebook friend, I have posted it there. If you know my parents, you can email them to request it. Most of you know where I work, so you can find that address too. I just don’t want to post my address on the internet since this is an open forum that anyone can see.
Thank you again for all your kindness and concern. I am truly blessed to have each and every one of you in my life.
Between my family, friends, my work family at AMS, the Atlanta sports media community and being a part of the NASCAR community, I am astounded at how much love and support I have right now. All I can think about is the people who go through something like this and do not have the network of support that I do. I cannot imagine facing this and feeling alone without any assistance.
Thank you to everyone who has sent me an email or post of support. This has given me more strength than you will ever know. I am also touched by how many of you have been impacted by cancer in your life – yourself, a family member or a friend. I have also had quite a few people reach out to offer advice for those that have gone through this. Thank you and I may reach out in the future, but right now I’m getting all the information I can about the next few weeks ahead from my doctors. I’m not sure I want to jump too far ahead learning about this road I have in front of me the next few months. I am already scared enough and processing so much information right now. In some ways, ignorance is bliss. I can’t imagine having more to worry about that isn’t right in front of me. This will be a long journey and I’m sure there will be time to connect.
I’m also so impressed with the cancer program at Piedmont Hospital. I swear, everyone there must have to pass some type of kindness test in order to work there. I have a nurse that is dedicated to me and my time with her does not get billed to my insurance program. They have a wellness center that provides counseling services, a nutritionist, yoga classes, acupuncture, massage, cooking classes, resources classes all for free for cancer patients. I am blown away by all they provide and all of this is provided by grants from the Susan G. Komen foundation and the American Cancer Society mostly, I believe. So for any of you that donate to those organizations – THANK YOU! I cannot tell you how wonderful that resource is – it is such a comfort. I signed up for a class that will provide beauty techniques to battle the side effects of chemo. I didn’t realize that I won’t be able to use many of the beauty products I use now. My bathroom is going to have to undergo a complete overhaul.
Yesterday was a good news/bad news day.
The good news:
1) Talked to the nurse I mentioned above and she was AMAZING. I was able to ask her the myriad of questions. She informed me that if my biopsy comes back with a positive reading for the HER2, that is the chemo that I will have to undergo once a week. Please pray for that to come back negative. She said if I do not have that, then I should expect to have chemo treatments every two to three weeks. She suggested after my first chemo treatment, to set aside the whole next week off work, as I won’t be able to know which day will be my “bad” day. She said for some people it is day 2, for some day 5, but the good news is that once I find what my “bad” day will be, that I can predict that to be my bad day going forward. That if I get sick on day 5, it will always be day 5, so that’s good news. She also assured me that this time I’m going through right now is the worst time, just because there is still so much unknown. That once I get through this, that I can finally figure out what my new “normal” would be. She said it won’t be fun, but it will be predictable, so I can try to lead as normal I life I can. That this is my hell period right now, so I have hope that it won’t be worse than this – thank God, because it is bad.
2) I was also told that one of my coworker’s wife is a nurse where I am having my surgery Tuesday, so he promised she would take good care of my and my family/friends, so that was very comforting.
For the bad news:
1) When I went to go make my appointment with the wig person, I was informed my insurance does not provide wigs for cancer patients. The wigs can run $450-$650 for synthetic and human hair wigs start at $1,000. Tracy Carmony with WXIA-TV has offered to coordinate putting a fund together for anyone wanting to help donate and her email address is tcarmony@wxia.gannett.com.
As I’m gathering all this information, here are the biggest hurdles I have coming up:
1) July 7 – port surgery, biopsy and MRI
2) July 10 – meeting with the oncologist to determine what kind of cancer I have and the treatment plan
3) Week of July 13 – first chemo treatment (and learning what my bad day will be)
4) Week of July 13 – results from genetics testing that will let me know if I have to have a double mastectomy and removal of ovaries/fallopian tubes at the end of this road
5) Between July 30 through August 3 – losing my hair
I hope that once I get through this time period, I hope to be able to find my “new” normal. I hope to be able to return to doing things with friends and I’m sure at that time my close friends and family will enjoy taking a break and letting someone else occupy some of my time socially. Just know that this first month is tough and it is overwhelming just keeping my close circle informed.
I am also proud of myself. If you know me well, you know I pride myself of being a strong, independent person. I have realized now that I have to give things away and focus all my energy on getting well. I have turned my diet over to my mother. I will let her make all my meals and make sure that I’m eating the foods the nutritionist outlines. She will also be cleaning my house. I’ve turned all my indoor and outdoor plants to my best friend who lives next door. I’ve asked another friend to educate herself and teach me how to tie head scarves. So I’m learning to ask for help and give up control. For those of you that know me well, you can laugh now. I now don’t care how the dishes are put in the dishwasher, where things go in the refrigerator, how the towels are folded or where things get put away. It really doesn’t matter much anymore – I’m just thankful for the help.
As for how I feel? I’m still in a bit of pain. My left arm now aches all the way to my fingertips and the pain medicine isn’t much help. I’m actually looking forward now to the first chemo treatment so it can be shrunk and get some relief. Also, the nausea hasn’t gone away. I don’t feel like eating and have to force myself to eat. I’ve lost seven pounds in five days. Mornings seem to be the worst. Since Saturday night, I haven’t been sleeping at all. Usually on 2-3 hours a night. Fortunately, I think the exhaustion set in as I went to bed at 9:30 p.m. last night and slept until 6:00 a.m. this morning. This morning was also positive. It didn’t have as hard a time getting ready. The past few days, it has been heartbreaking getting ready each morning. Crying in the shower. Hating myself looking in the mirror because I’m unsure of what I will look like a month from now. Styling my hair has been the worst – it isn’t fun anymore; it is heartbreaking. The best analogy I can give you is someone trying to kiss you that you know is breaking up with you in a month. How can I love something anymore that I know is going to let me down soon in a really big way?
I’m trying to keep busy – work, time with friends and trying to rest are helping right now. I’m just trying to keep my mind occupied until Tuesday next week which will be a rollercoaster.
Many of you have asked for my home address. If you are my Facebook friend, I have posted it there. If you know my parents, you can email them to request it. Most of you know where I work, so you can find that address too. I just don’t want to post my address on the internet since this is an open forum that anyone can see.
Thank you again for all your kindness and concern. I am truly blessed to have each and every one of you in my life.
Wednesday, July 1, 2009
No one can ever prepare you for this.....
First, thank you for your care and concern for me. I created this blog for several reasons: one, I hope it is therapeutic for me and two, I needed a vehicle for friends and family to get the most current information on what I’m going through. I am so unbelievably blessed to have so many friends who want to reach out right now. But at the same time, I don’t have the energy to field all the phone calls. It really drains you having to tell the same information over and over again, all the while crying your eyes out. Heck, maybe that’s what’s supposed to happen because it does numb you.
What I can tell you is hearing the word “cancer” is worse than you can ever imagine. No one, and I mean no one, can prepare you for it. It brought me to my knees the first time I knew I was in trouble.
To save time and space, I’m going to try to give all of you the shortest version I can of how I got to where I am today and what the doctors have said. I know this blog entry will probably be the longest one I ever post, because there is so much information. No one prepares you for how much information is thrown at you at once. It feels like a job keeping up with it all.
This all started in early June with a pain in my left breast. I did a self breast exam on June 9 and found a large mass under my left armpit. Best I can describe it as is like a bar of Dove soap, about 3 inches wide and round in shape. It seemed like it came up overnight. I made an appointment with my primary care physician on June 10, who thought it might be a cyst or infected lymph node. I received a mammogram and ultrasound on June 11. Since they saw blood vessels on the ultrasound, they believed it to be an infected lymph node, prescribed me antibiotics for 10 days and sent me on my way. The antibiotics did not work and was referred to a breast surgeon, since the tissue in the armpit is considered breast. I received a great referral from a friend who pointed me in the direction of a group at Piedmont Hospital. The appointment was on June 22 and they did a needle biopsy in the office. They confirmed it was not a cyst since the needle did not deflate it. So, in my mind, I had decided it was an infected lymph node. NEVER did cancer ever enter my mind.
I called the doctor on Saturday, June 27 at 10:30 p.m. because I was in pain. I asked her if she would please just prescribe me a new antibiotic because I didn’t want to await test results to start getting some relief. She informed me that what I was dealing with was not an infected lymph node. It brought me to my knees. I knew from research that if it wasn’t an infected lymph node it was something real, real bad. I still can’t describe well that feeling – it just levels you.
I had to wait two days later, on Monday, June 29 to hear the word “cancer.” I was glad I had two days to prepare for that appointment. Had I not, I wouldn’t have heard a word the doctor said and the amount of information they throw at you, you have to be prepared for.
The next stop was an appointment with the oncologist on Tuesday, June 30. The doctors still do not have all the information they are looking for to define my cancer. At this point, they care classifying it as “Stage 3 Infiltrating Ductal Carcinoma.” Carcinoma means cancer. Ductal means it originated in the ducts. Infiltrating means it has spread outside the area of origin. Stage 3 refers to the size. Cancer stages are listed as 0 to 4, with 4 being it has traveled to other areas in the body.
The oncologist needs more information about the cells to narrow down the course of treatment. This will be done on Tuesday, July 7. Another needle biopsy will be preformed, plus I will be undergoing surgery to have a port put in. A port is a less painful way to administer chemotherapy. It sits around your collarbone/chest area under your skin. They also use it to take blood samples as they want to try to prevent anemia, which is a side effect of chemotherapy. I will also be undergoing a MRI the same day, all which will help the oncologist get the best information he can to start my treatment. He’s still missing the information on the presence of an estrogen receptor and HER2, plus the tumor size and if it has spread to the lymph nodes. Hopefully, with the biopsy and MRI, he can determine which chemotherapy drugs he will be administering and how often I will need chemo. It can be as often as once a week and a few as once every three weeks. Chemo will start the week of July 13.
I was informed no matter what drugs he uses, I will lose my hair. I didn’t realize it would happen so soon. They say it will come out 17 days to the day from my first chemo treatment. I’m still not sure I have come to terms with that, no matter how often I say it. I have a great hairdresser who advised me to cut it shorter beforehand so it is not so traumatic. So on Saturday, July 11, I will be going shorter and by the first of August, it will all be gone.
Here is what the doctor says will be the course of the treatment:
1) 4-6 months of chemotherapy
2) One month rest
3) Surgery following – this can be a lumpectomy with radiation or it could be a mastectomy. I had to see a genealogist today to determine if I have the BRAC gene. If I do, they will recommend a double mastectomy and removal of the ovaries and fallopian tubes. I get those results 14 days from today. Pray that result comes back negative.
4) Two months rest
5) Followed by hormonal treatment for five years and observation
I was also not prepared to hear that the chemotherapy would drastically affect my fertility. I met with a fertility doctor today to see if my eggs could be saved before chemotherapy. Unfortunately, if we started today, it would take 17 days to do a full harvest and my oncologist needs to start chemo before then due to the advanced stage of my cancer. If I ever do give birth, it will be six years from now and it will never be my own child – it would have to be done with a donor egg.
Needless to say, in the last few days, I have learned I have an advanced stage of cancer and have to give up my dream of giving birth to my own child. I can’t imagine it getting any worse than that.
I appreciate all your concern. I will continue to post updates and I promise it will never be this long again.
I am blessed to have my parents, close girlfriends and amazing co-workers to help me through all of this. I know many of you have made offers to help and you feel helpless in the process, so here’s what you can do:
1) Pray for me, as much as you can. Never underestimate the power of prayer.
2) Send me emails of encouragement or cards or whatever is on your mind, but allow me not to respond. Fielding phone calls right now is overwhelming. I just can’t continue to repeat these horrible things over and over. It is too painful. But I sincerely do appreciate the gesture.
3) I need laughter right now. Anything that would make me smile or take my mind off of things is awesome. It creates a sense of normalcy.
4) And if you really want to DO something, shop for a kick ass hat or scarf (36” square) for me. I still want to look trendy when I lose my hair and I will be without it for quite a long time. It would be cool to have a nice selection to choose from. I also want to donate it when I’m done to help someone else who doesn’t have the great support network I do.
Thank you again for all your care and concern. It means so much, but it is so hard to process just all the medical information right now. You can subscribe to the blog and be updated each time I make the post if you are interested in following my journey.
With love,
Marcy
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