I don't have a whole lot to update on, but I felt like it was time to post again. Keep in mind that in this case, no news is good news. :) I am still waiting to start my radiation. I have what's called a simulation this Friday (3/22). I will have xrays done of the area to be treated and will be marked with "tattoos" so that the exact same areas will be treated each time. Hopefully we can start next week, but I really don't know the time frame from the simulation to the start of treatment. I'll have to go in 5 days a week for 6 weeks. I'm told that the most common side effects from radiation are skin burns and fatigue. I guess I'm looking forward to those after the side effects from chemo.
I'm pretty much healed from the mastectomy and have been having fills in my tissue expanders. I'm not going to pretend it doesn't hurt because it does! The expanders are underneath my pectoral muscles, so after the saline is injected to stretch me out, it really does feel like I am being ripped apart. Luckily, the pain only lasts for a couple of days, so I guess in the end I can say it was worth it. My plastic surgeon actually told me that he was impressed with my "breasts." They are progressing exactly as they should be and my skin is beautifully elastic. (Good thing, since I'm only 29!) My permanent implants will go in 6 months after I finish my radiation treatments though I wish it could be NOW since the expanders are truly uncomfortable. They really feel like boulders sitting on my chest.
I am impressed by the turnout we had at the taco dinner my (BEST) friend organized for me. And I am grateful for everyone who attended and those who donated... I am humbled by the support. I was able to completely pay off a couple of bills after the event! I still have more and I will still incurr more. I am keeping my youcaring site active for a while longer in case any of you are willing to share my journey with your friends or if you want to donate but have not been able to yet. Again, thank you, thank you, thank you!
link to: youcaring fundraiser site
Tuesday, March 19, 2013
Saturday, March 2, 2013
Blessed
How blessed am I to have so many people pulling for me?! I am amazed and humbled by the support being shown, both monetarily and emotionally. I was able to completely pay off one of my very expensive chemo treatments thanks to donations from wonderful people. I thank you for that. I thank you for being there for me...
I apologize for the misunderstanding about the donation site in my last post. The flyer is actually a picture, so you cannot simply click the link. But if you are interested in donating any amount towards my medical bills and are not planning on attending the fundraiser dinner, you can use this link. If you are planning on attending, I can't wait to see you (and be sure you rsvp)!
I am feeling GREAT five weeks after surgery. I am healing well and have all of my range of motion back. I have no pain other than the day or two after my "fills" for my tissue expanders. I have been back to work since 3 weeks out of surgery, albiet with some lifting restrictions. It really does feel good to be getting back to "me." I will have one more filling process on the 15th and will most likely start my radiation the next week. I will have treatment for 6 weeks, 5 days a week. I pray that radiation goes without a hitch just as everything else has. (And I'll knock on wood, too!)
My hair is coming back, as I'm now NINE weeks out from my last chemo treatment! My eyebrows are growing in and I have enough eyelashes to actually put mascara on. :) I know it sounds vain, but it really does feel good not to look like a cancer patient anymore even though I'm still fighting.
So other than the hair and the fundraiser, there's a big fat nothing new! Hooray!
I apologize for the misunderstanding about the donation site in my last post. The flyer is actually a picture, so you cannot simply click the link. But if you are interested in donating any amount towards my medical bills and are not planning on attending the fundraiser dinner, you can use this link. If you are planning on attending, I can't wait to see you (and be sure you rsvp)!
I am feeling GREAT five weeks after surgery. I am healing well and have all of my range of motion back. I have no pain other than the day or two after my "fills" for my tissue expanders. I have been back to work since 3 weeks out of surgery, albiet with some lifting restrictions. It really does feel good to be getting back to "me." I will have one more filling process on the 15th and will most likely start my radiation the next week. I will have treatment for 6 weeks, 5 days a week. I pray that radiation goes without a hitch just as everything else has. (And I'll knock on wood, too!)
My hair is coming back, as I'm now NINE weeks out from my last chemo treatment! My eyebrows are growing in and I have enough eyelashes to actually put mascara on. :) I know it sounds vain, but it really does feel good not to look like a cancer patient anymore even though I'm still fighting.
So other than the hair and the fundraiser, there's a big fat nothing new! Hooray!
Saturday, February 16, 2013
Survivor?
I had an appointment with my oncologist on Thursday (2/14) and he referred to me as a "survivor." I guess technically I am cancer free. But I don't feel as though these phrases really apply to me. I am still fighting. I am still working on making sure the cancer doesn't show up again in the coming years. I am currently in the "expansion" part of my reconstruction and hopefully will be starting my radiation treatments in 1-2 months.
And I guess I've lost my positivity. I have been thinking and saying WHEN the cancer comes back, not IF. And I guess it's because I'm scared. Up until my surgery, I saw the tumor as something we were going to treat and get rid of and then I was going to move on with my life. After the surgery, when I found out I did in fact have cancer in my lymph nodes, I now imagine the microscopic cells invading other parts of my body. I know that the chemo should have taken care of those and that is the exact reason we started my treatment with chemo. But I think of the aggressiveness of the cancer I did have (how quickly my tumor grew in the first place!), and I feel that it somehow escaped the poisoning. I have nightmares about- I had one where once I was deceased, they examined my liver and it was covered with breast cancer cells, and another one where I won the lottery but my husband had to pay for all my medical bills and my funeral with the money.
On a different note, I am feeling incredibly blessed and humbled by the outpouring of support. I am truly dumbfounded by how many people have reached out to me to tell me that I am in their thoughts and prayers. And I am also incredibly grateful for those of you who have been so generous in donating to help with the bills. I'm not sure how to go about ackowledging each of you individually, but please, please, please don't think I take any of your kindnesses for granted.
And I guess I've lost my positivity. I have been thinking and saying WHEN the cancer comes back, not IF. And I guess it's because I'm scared. Up until my surgery, I saw the tumor as something we were going to treat and get rid of and then I was going to move on with my life. After the surgery, when I found out I did in fact have cancer in my lymph nodes, I now imagine the microscopic cells invading other parts of my body. I know that the chemo should have taken care of those and that is the exact reason we started my treatment with chemo. But I think of the aggressiveness of the cancer I did have (how quickly my tumor grew in the first place!), and I feel that it somehow escaped the poisoning. I have nightmares about- I had one where once I was deceased, they examined my liver and it was covered with breast cancer cells, and another one where I won the lottery but my husband had to pay for all my medical bills and my funeral with the money.
On a different note, I am feeling incredibly blessed and humbled by the outpouring of support. I am truly dumbfounded by how many people have reached out to me to tell me that I am in their thoughts and prayers. And I am also incredibly grateful for those of you who have been so generous in donating to help with the bills. I'm not sure how to go about ackowledging each of you individually, but please, please, please don't think I take any of your kindnesses for granted.
Saturday, February 2, 2013
Recovering
Well, now that I've had time to "digest," it's time for the update.
Surgery went without a hitch. According to my family, the surgeons were pleased with how it went. I'm very surprised how anxious I was NOT going into it. Prep was pretty quick, at least the prep while I was awake. I changed into my gown with the opening in the back and put on some socks and was told I didn't have to wear the hat since I'm bald. I signed some paperwork, answered some questions and had radioactive dye injected into the tumor area. My nurse gave me the "happy juice," my plastic surgeon drew lines all over me, and I kissed my family goodnight. I was asleep before they even moved me out of the temporary room. I very vaguely remember the OR.
I also very vaguely remember recovery, but the nurse sitting with me did bring me apple juice. That was nice. The transport from recovery to my room is also fuzzy, though I remember seeing the hubby and smiling at him. I was conscious enough once they moved me to be regular bed to ask for ice water and my phone so that I could update Facebook. :) The hubs ordered my clear liquid dinner and once it arrived, my nurse gave us the go ahead for "real food." I guess I was overzealous since I hadn't eaten all day and after the first couple of bites of food, I felt nauseated. Luckily as long as I ate slowly I was okay. My dad, mom, step-dad, and husband stuck around for a little while, but to no one's surprise, I was ready to sleep for the night.
I called for my nurse around 9:00 pm to help me to the bathroom. I hadn't gone in 13 hours and I was feeling like I was ready to get up and around anyway. However, that didn't go so well. I made it to the bathroom (excruciating pain trying to get out of bed!), but almost as soon as I sat I started feeling lightheaded. I told the nurse I was dizzy. He called for the CNA to come help him. He asked how dizzy. I told him the room was black. I heard him yell "She's going down!" I remember being irritated with him that he was making me keep my head up. All I wanted was to lay down. It took both of them (both men) to get me off the toilet and onto a rolling recliner. Once I was able to lay, my head cleared. And believe it or not, I did pee during that ordeal.
Even though I was reassured that it's pretty normal for the first time up post surgery, they still sent in someone from the lab to take blood and sent someone in with an EKG machine. They also told me that I MUST wear my oxygen mask. Hooked up to the oxygen, the IV, the massaging calf boots, and having three tubes hanging from where my breasts used to be really made me feel like a patient or something. I must admit, I really didn't like that feeling.
The morning after surgery, my surgeon did the rounds and pulled my bandage up to check on it. I wasn't sure I wanted to look, but I was actually pleasantly surprised. Granted my chest wasn't the size it was when I woke up the previous morning, I still had bumps that produced cleavage due to the 100 cc's of fluid in the tissue expanders. I had a skin sparing mastectomy in order to aid the reconstruction, so the plastic surgeon was able to make a "purse string" stitches right about where my nipples used to be. This technique allows the most natural shape. It's not quite as ugly as it could have been and I'm actually looking forward to the end result.
The next step is filling the expanders a little at a time to stretch the pectoral muscles that have been manipulated on top of them and prepare me for the permanent implants. Once I reach the desired size (about 2 months from now), I will start radiation. Radiation damages skin and we want to be sure that my skin is still elastic during this expansion process. I was really hoping to not have to do radiation, but went I went for my consult with the doctor, he told me what I knew but didn't want to hear. Stage 3 = radiation. It would not have mattered what was in my lymph nodes, the tumor was just too big to take any chances.
But there was cancer in the lymph nodes. Seeing as how they removed all the breast tissue, they are sure the whole tumor is gone, but even after 8 rounds of chemotherapy there is still cancer in the nodes. This news makes me glad that I had already resigned myself to the fact that I'll be having radiation... That will zap out the remaining cancer in that local area. But I am scared that in a couple of years I won't be cancer free any more. If the beast already moved out of the breast tissue and into the lymph, there is no guarantee that it has not found another part of my body. I have an appointment with my medical oncologist (chemo doctor) on February 14th, so we'll get his take on it then.
Until then, I focus on healing, but I'm not good at being a patient. It really frustrates me when I can't do things for myself. It especially frustrates me when I can't do things for my children- like bend to kiss a boo boo or reach up to brush hair. My muscles are tight (remember the pectoral manipulation/stretching?) and I'm pretty swollen despite having three drains to take care of the fluid. The pain isn't so bad anymore, I can deal with just plain Tylenol, but getting up from a laying position is really rough. I'm only supposed to do what I can, the doctor says I'll have exercises and stretches later on.
I want to take a second to thank EVERYONE who has helped us on this journey. We haven't had to worry about food at all this past week, nor will we have to worry next week. It definitely takes a load off my mind as I'm still barely up to showering. And thank you to those who have sent cards and get well sentiments. I truly appreciate that fact that I'm am in so many hearts...
A benefit dinner for our medical debt is in the planning stages, so if you are interested, mark your calendars for March 10, 2013. More details will follow.
Surgery went without a hitch. According to my family, the surgeons were pleased with how it went. I'm very surprised how anxious I was NOT going into it. Prep was pretty quick, at least the prep while I was awake. I changed into my gown with the opening in the back and put on some socks and was told I didn't have to wear the hat since I'm bald. I signed some paperwork, answered some questions and had radioactive dye injected into the tumor area. My nurse gave me the "happy juice," my plastic surgeon drew lines all over me, and I kissed my family goodnight. I was asleep before they even moved me out of the temporary room. I very vaguely remember the OR.
I also very vaguely remember recovery, but the nurse sitting with me did bring me apple juice. That was nice. The transport from recovery to my room is also fuzzy, though I remember seeing the hubby and smiling at him. I was conscious enough once they moved me to be regular bed to ask for ice water and my phone so that I could update Facebook. :) The hubs ordered my clear liquid dinner and once it arrived, my nurse gave us the go ahead for "real food." I guess I was overzealous since I hadn't eaten all day and after the first couple of bites of food, I felt nauseated. Luckily as long as I ate slowly I was okay. My dad, mom, step-dad, and husband stuck around for a little while, but to no one's surprise, I was ready to sleep for the night.
I called for my nurse around 9:00 pm to help me to the bathroom. I hadn't gone in 13 hours and I was feeling like I was ready to get up and around anyway. However, that didn't go so well. I made it to the bathroom (excruciating pain trying to get out of bed!), but almost as soon as I sat I started feeling lightheaded. I told the nurse I was dizzy. He called for the CNA to come help him. He asked how dizzy. I told him the room was black. I heard him yell "She's going down!" I remember being irritated with him that he was making me keep my head up. All I wanted was to lay down. It took both of them (both men) to get me off the toilet and onto a rolling recliner. Once I was able to lay, my head cleared. And believe it or not, I did pee during that ordeal.
Even though I was reassured that it's pretty normal for the first time up post surgery, they still sent in someone from the lab to take blood and sent someone in with an EKG machine. They also told me that I MUST wear my oxygen mask. Hooked up to the oxygen, the IV, the massaging calf boots, and having three tubes hanging from where my breasts used to be really made me feel like a patient or something. I must admit, I really didn't like that feeling.
The morning after surgery, my surgeon did the rounds and pulled my bandage up to check on it. I wasn't sure I wanted to look, but I was actually pleasantly surprised. Granted my chest wasn't the size it was when I woke up the previous morning, I still had bumps that produced cleavage due to the 100 cc's of fluid in the tissue expanders. I had a skin sparing mastectomy in order to aid the reconstruction, so the plastic surgeon was able to make a "purse string" stitches right about where my nipples used to be. This technique allows the most natural shape. It's not quite as ugly as it could have been and I'm actually looking forward to the end result.
The next step is filling the expanders a little at a time to stretch the pectoral muscles that have been manipulated on top of them and prepare me for the permanent implants. Once I reach the desired size (about 2 months from now), I will start radiation. Radiation damages skin and we want to be sure that my skin is still elastic during this expansion process. I was really hoping to not have to do radiation, but went I went for my consult with the doctor, he told me what I knew but didn't want to hear. Stage 3 = radiation. It would not have mattered what was in my lymph nodes, the tumor was just too big to take any chances.
But there was cancer in the lymph nodes. Seeing as how they removed all the breast tissue, they are sure the whole tumor is gone, but even after 8 rounds of chemotherapy there is still cancer in the nodes. This news makes me glad that I had already resigned myself to the fact that I'll be having radiation... That will zap out the remaining cancer in that local area. But I am scared that in a couple of years I won't be cancer free any more. If the beast already moved out of the breast tissue and into the lymph, there is no guarantee that it has not found another part of my body. I have an appointment with my medical oncologist (chemo doctor) on February 14th, so we'll get his take on it then.
Until then, I focus on healing, but I'm not good at being a patient. It really frustrates me when I can't do things for myself. It especially frustrates me when I can't do things for my children- like bend to kiss a boo boo or reach up to brush hair. My muscles are tight (remember the pectoral manipulation/stretching?) and I'm pretty swollen despite having three drains to take care of the fluid. The pain isn't so bad anymore, I can deal with just plain Tylenol, but getting up from a laying position is really rough. I'm only supposed to do what I can, the doctor says I'll have exercises and stretches later on.
I want to take a second to thank EVERYONE who has helped us on this journey. We haven't had to worry about food at all this past week, nor will we have to worry next week. It definitely takes a load off my mind as I'm still barely up to showering. And thank you to those who have sent cards and get well sentiments. I truly appreciate that fact that I'm am in so many hearts...
A benefit dinner for our medical debt is in the planning stages, so if you are interested, mark your calendars for March 10, 2013. More details will follow.
Thursday, January 17, 2013
We Have a Date
Wow. Things just got incredibly real.
I just went from being really frustrated that the two surgeons' offices couldn't coordinate and figure out a date for my surgery to overwhelmed because of the phone call that told me that this surgery will take place SIX days from now. My mastectomy and first part of reconstruction will be Wednesday, January 23.
I'm actually very glad that they gave me very little time to "absorb." As soon as I heard that date, I immediately started sweating. I knew this was coming. I've had more than 4 months to decide, understand, plan... But it's here. NOW. I'm so anxious about losing a part of myself (as much as they disgust me) and about having surgery. I know I'll get through this. I'm hoping I can bounce back as easily as I managed to through chemo. But it's so major! My life has been altered from the day of the diagnosis, and here's another step.
I have updated the meal train dates, so if you are interested in helping with a meal, you can sign up now. If anyone is interested in helping any other way, please contact me so that I can coordinate: Meal Train
Oh man...
I just went from being really frustrated that the two surgeons' offices couldn't coordinate and figure out a date for my surgery to overwhelmed because of the phone call that told me that this surgery will take place SIX days from now. My mastectomy and first part of reconstruction will be Wednesday, January 23.
I'm actually very glad that they gave me very little time to "absorb." As soon as I heard that date, I immediately started sweating. I knew this was coming. I've had more than 4 months to decide, understand, plan... But it's here. NOW. I'm so anxious about losing a part of myself (as much as they disgust me) and about having surgery. I know I'll get through this. I'm hoping I can bounce back as easily as I managed to through chemo. But it's so major! My life has been altered from the day of the diagnosis, and here's another step.
I have updated the meal train dates, so if you are interested in helping with a meal, you can sign up now. If anyone is interested in helping any other way, please contact me so that I can coordinate: Meal Train
Oh man...
Friday, January 11, 2013
Waiting for a Date
I am now awaiting my surgery to remove my breast tissue and start the process of reconstruction. I saw the surgeon who will be doing my mastectomy on Tuesday (1/8) and saw the plastic surgeon who will be doing my reconstruction this morning (1/11). Now I have to wait for their "people" to coordinate with the hospital's "people" to get my date. It could be as early as 1/23 or as late as 2/13. I expressed to both offices that the earlier, the better. I was told I should receive a call by Tuesday (1/15).
In case you missed it in other posts, due to my BRCA1+ gene mutation, I have opted for a bilateral mastectomy. I don't want the worry of recurrence to be on my mind for the rest of my life because of this mutation that makes my risk ridiculously high. Any of my own breast tissue is game for cancer. That is scary. Obviously for vanity reasons (remember that I'm only 29!), I want to have breasts. There are a couple of options for getting "new ones," but I have opted for the simplest and most common- silicone implants. After the general surgeon performs a skin sparing technique for removal, the PS will insert what's known as an expander in order to stretch my muscle and remaining skin to accomodate the implant. Once I am healed, this expander will be filled with saline a little at a time (PS said every two weeks) in order to reach desired space (or size :) ). Then another surgery will take place to make an exchange- the expander for the implant. If it is determined that I need radiation as part of my treatment, the PS will decide whether we shouls radiate first or expand first. Radiation causes damage to skin and is detrimental to implants, so exchange surgery will not occur until I finish radiation.
I have had offers of meals brought while I am out of commission. I have created a "meal train" in order to better organize. If you have made this offer to me, or this offer is in your heart, you can sign up here: meal train . Right now the dates are not exactly accurate as I just don't know. I will update once I DO know. Also, if you are interested in helping in any other way, let me know. The husband is trying to take as little time off work as possible, since every day he takes off is money lost for us. :(
In case you missed it in other posts, due to my BRCA1+ gene mutation, I have opted for a bilateral mastectomy. I don't want the worry of recurrence to be on my mind for the rest of my life because of this mutation that makes my risk ridiculously high. Any of my own breast tissue is game for cancer. That is scary. Obviously for vanity reasons (remember that I'm only 29!), I want to have breasts. There are a couple of options for getting "new ones," but I have opted for the simplest and most common- silicone implants. After the general surgeon performs a skin sparing technique for removal, the PS will insert what's known as an expander in order to stretch my muscle and remaining skin to accomodate the implant. Once I am healed, this expander will be filled with saline a little at a time (PS said every two weeks) in order to reach desired space (or size :) ). Then another surgery will take place to make an exchange- the expander for the implant. If it is determined that I need radiation as part of my treatment, the PS will decide whether we shouls radiate first or expand first. Radiation causes damage to skin and is detrimental to implants, so exchange surgery will not occur until I finish radiation.
I have had offers of meals brought while I am out of commission. I have created a "meal train" in order to better organize. If you have made this offer to me, or this offer is in your heart, you can sign up here: meal train . Right now the dates are not exactly accurate as I just don't know. I will update once I DO know. Also, if you are interested in helping in any other way, let me know. The husband is trying to take as little time off work as possible, since every day he takes off is money lost for us. :(
Friday, December 28, 2012
That was That
I completed chemo treatment #8 yesterday. That means I'm done! At least for the time being. We still don't know exactly how aggressive the cancer was/is, so we'll have to see after surgery, radiation and future scans. I pray that the chemo did its job and was able to rid my body of any lurking disease. It did its job on my primary tumor, there most definitely was measurable shrinkage though not complete dissolution.
The next step is surgery. I go to see my surgeon on January 8th, so we should have a game plan then. It looks like I'll be out of commission for around two weeks, so I'm asking for help now. If there is anything you can/ want to do to help, let me know as soon as you can; phone call, text message, FB message, or even comment here. I want to get my ducks in a row before it gets too late. I will be having a complete double mastectomy- meaning no lifting, no reaching, etc.
That's the only update I have. Other than my grandfather's passing, I had a very relaxing holiday season. :) I hope all my readers did too! Tomorrow my family is taking a road trip from MI to MD. Hopefully chemo side effects don't make the ride too terribly uncomfortable...
The next step is surgery. I go to see my surgeon on January 8th, so we should have a game plan then. It looks like I'll be out of commission for around two weeks, so I'm asking for help now. If there is anything you can/ want to do to help, let me know as soon as you can; phone call, text message, FB message, or even comment here. I want to get my ducks in a row before it gets too late. I will be having a complete double mastectomy- meaning no lifting, no reaching, etc.
That's the only update I have. Other than my grandfather's passing, I had a very relaxing holiday season. :) I hope all my readers did too! Tomorrow my family is taking a road trip from MI to MD. Hopefully chemo side effects don't make the ride too terribly uncomfortable...
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