Loss is no fun for anyone. Specially when it is back to back or constantly coming back to haunt you. I lost my mom when I was young. Shortly after my dad moved away. He left me fragile and young with a child of my own to take care of. I understand it now and I have forgiven him for how he handled the situation. He was hurting and ran away from the pain. It probably never occurred to him that I was hurting too and I needed him. Humans are selfish beings. It is engrained in us no matter how much charity work you do or how giving you are. He was selfish and at that time in his life he felt like he needed to be. If our relationship prior to my mom's illness was different things may have been different when she died. Through the illness he clung to my brother and nephew while I clung to my sister. Those were our support people that got us through it all. Then after Mom passed away my dad clung to another woman. I hated her. I really truly hated that woman for coming in and trying to replace my mom. How could this woman think she would ever replace my dear angelic mother? Well, that was my interpretation of it at the time...
After all of these years I realize that she is good for my dad. They take care of each other and neither of them are alone. I do believe they love each other now but I know neither of them are in love the way they were with their deceased spouses. It works for them. The companionship and friendship they have is good for them. They fight sometimes and that is weird to me. My parents never fought. I never saw one single fight between them. It just didn't happen. They loved each other so much that nothing could make them so mad at each other that they would fight and be hateful in any way. That is the love that I have always wanted. Love can conquer all...except cancer.
Cancer stole my mom from our family. When I found out I was BRCA positive I instantly became obsessed with cancer. I wanted to learn how this mutation affected me and any potential cancers I could get as a result of it. I may have went a little mad with it. Everything I felt or any symptoms I had I was scared that it was a sign of cancer. I had my hysterectomy and BSO and that has calmed a little. I no longer worry about ovarian cancer but there's the breasts, skin, colon, etc that I still worry about. I'm not one of those "run to the doctor" kind of people. I sit back and I stress about the "what if's" of it all. What if I end up with breast cancer before I can have the PBM? What if my children are left to live out their lives in the same situation I did? What if their dad won't be there to support them emotionally if I'm gone?
I know there are so many "what ifs" in life and worrying about them will not make the outcome any better but I can't retrain my brain to think differently. I'm trying very hard though. I don't think about it constantly but it does happen often.
This weekend has been a rough one. I'm mad. I'm mad at Donnie. I'm mad at my situation. I'm mad at my inabilities. I'm mad at my frustration. I'm mad at myself. I'm mad that I can't let go of the hurt and pain I feel from all of these losses in my life. I'm mad that I have had to endure these losses and pain. I have all of this anger inside me and I don't know how to let go of it. I know I'm trying to work through the feelings instead of ignoring it but I can't seem to pinpoint where to start or what the root of all the anger is. How do you put your finger on what is bothering you when you have so many things that could be the source? It is overwhelming.
I'm mad at how overwhelmed I feel as well. I look at the house and I don't know where to start. I can't pick a room and clean because the whole thing is staring me in the face begging to be done. I get so overwhelmed sometimes that I just have to walk away from all of it. It gets done but not without me feeling like I'm going crazy in the process. That is just one example of the frustration I feel. I want to ignore things and hope they go away even though I know it doesn't work like that. I think if I ignore Donnie the issues with him will just go away but all it does is make me build up more hatred towards him. Then that hatred comes out in snide comments and looks of disgust. I'm careful to pretend in front of the boys but I guess that only makes me a really good actress. Unfortunately, I am a good actress and have been for so very long. I never let my feelings show when it is personal. How many times people have said something about my mom and I say "its ok" when really its not at all?? Way too many to count. Its not ok! Its not ok that I lost her and its not ok that Donnie walked out. It fucking hurts. I feel lost. I feel like I got dealt the shitty hand of life.
Strong...everyone tells me how strong I am. I don't feel strong. I feel weak! I feel like I'm weak because I can't have this perfect little life for the kids. I feel weak because I can't handle the stress and pain. All of that weakness I feel turns into anger. It is a vicious cycle and menopause doesn't help any of it. I feel like a crazy person muddling through life as I'm being thrown curve balls. I just keep dodging and walking the path that I'm walking. It is never ending and never changing. It is full of pain, loss and anger. I just want to find that rainbow that doesn't fade when the clouds move in. I want to find that happiness that lasts through the hard times.
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Monday, December 15, 2014
Friday, December 12, 2014
Wow, its been over a year...an update!
Ok, I have been off the radar for a while so we need to catch up.
Let's see...where to start...
Menopause sucks but its manageable, I found out I have a form of lupus that effects my skin, I have allergies to things you can't get away from and I'm now a single mom of 3 boys.
Yep, you heard that right. Single mom status over here...
Totally unexpected on my part but my husband walked out. No he ran out in the middle of the night and then broke up with me through a text message. Pretty great way to end a 14 year relationship right? That was in July. July is a hard month for me. My mom's birthday, my birthday, and our wedding anniversary are all in July. Its an emotional month all around.
For months I cried and begged him to come back. I was miserable. I didn't want to go on with out him. Everyday gets better though. I'm seeing two counselors...yep two! I have come to realize I'm pretty messed up emotionally. The first step is to admit it right?!
I had planned on having my prophylactic bilateral mastectomy (PBM) this year but now I have to put it off for a little bit. I'm hurt by that because he was supposed to be there and support me through all of this. I lost my best friend, my husband and my emotional support. Luckily I have amazing people in my life that are there for me.
So back to the previvor journey...menopause sucks.
Well the lack of a period and PMS is pretty amazing but the hot flashes and night sweats were killing me for a while. I gained weight, fell into a depression, was always tired and just felt miserable for a while. Then he left. Wow I was a mess. I'm getting better though.
My doctor and I agreed we should increase my estrogen a little. I'm still WAY below what a normal woman has but it helps with the menopause symptoms. I still have hot flashes but I'm not stripping my clothes off in public as much as I was...and I wasn't even getting paid to do it. Hell, with my road map of scars people might pay me to put my clothes back on. I tried a new medication called Brisdell as well. It helped a lot but it made me so sleepy at night that I felt like I wouldn't wake up if the kids needed me so I stopped taking it. I might try again though. I wasn't in the best place emotionally at that time so it could have been a mix of issues. The Brisdell doesn't have any hormones so it is safe for us BRCA Mutants. Seems like a miracle drug if it didn't make me loopy and pass out. Literally had to take it while in bed or I might not make it there before I was falling asleep.
I had my first breast MRI in October. I was scared to death of that thing. I was scared that I would get sick from the dye, get sick from anxiety of being trapped and scared that they would find something. My doctor told me to take some anti-anxiety meds before so I did. I might have been a little too happy to show my sister the weird stickers they put on my nipples after because of it. I made it through the test though. Not without some anxiety but I made it. Test results came back pretty good. I have a few things they are keeping an eye on like always but everything looks good for now. Four months and I have to get a mammogram...piece of cake!
Mammograms don't bother me at all. Take your shirt off, let some nice lady put your boob in a vice and take pictures. No big deal. Then you get to see your images a little while you are waiting topless in a cold room to see if she needs to take additional pictures. The pictures after squeezing your breast flat as a pancake are amazing though. My breasts have never looked so good. If you have ever had one, you know what I mean. They are perfectly round and look even better than they did before breastfeeding 3 kids.
Get your mammograms ladies! It isn't nearly as bad as the horror stories. I have never had any pain while getting one. Ok sometimes its not the most comfortable position to be in but its not that bad. At least we don't have to turn our head and cough. We just have to turn our head while they squeeze our boobs. Believe me when I say a baby grabbing your boob and using it as leverage to pull themselves up hurts WAY worse! All moms know what I mean when I say that.
Well that is a little recap of the last year. Lots of crap but off to bigger and better things. The saying "what doesn't kill us only makes us stronger" is kind of crap though. I lived by that for a long time but I bottled up the emotions. I'm learning now to process the emotions and let myself feel the pain so I can move forward with my life and be that "stronger" person. This quote seems more fitting...
"We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us. The old skin has to be shed before the new one can come." Joseph Campbell
Thanks Laurell K. Hamilton for putting that in the most unlikely place for me to see. I needed it at that very moment.
Let's see...where to start...
Menopause sucks but its manageable, I found out I have a form of lupus that effects my skin, I have allergies to things you can't get away from and I'm now a single mom of 3 boys.
Yep, you heard that right. Single mom status over here...
Totally unexpected on my part but my husband walked out. No he ran out in the middle of the night and then broke up with me through a text message. Pretty great way to end a 14 year relationship right? That was in July. July is a hard month for me. My mom's birthday, my birthday, and our wedding anniversary are all in July. Its an emotional month all around.
For months I cried and begged him to come back. I was miserable. I didn't want to go on with out him. Everyday gets better though. I'm seeing two counselors...yep two! I have come to realize I'm pretty messed up emotionally. The first step is to admit it right?!
I had planned on having my prophylactic bilateral mastectomy (PBM) this year but now I have to put it off for a little bit. I'm hurt by that because he was supposed to be there and support me through all of this. I lost my best friend, my husband and my emotional support. Luckily I have amazing people in my life that are there for me.
So back to the previvor journey...menopause sucks.
Well the lack of a period and PMS is pretty amazing but the hot flashes and night sweats were killing me for a while. I gained weight, fell into a depression, was always tired and just felt miserable for a while. Then he left. Wow I was a mess. I'm getting better though.
My doctor and I agreed we should increase my estrogen a little. I'm still WAY below what a normal woman has but it helps with the menopause symptoms. I still have hot flashes but I'm not stripping my clothes off in public as much as I was...and I wasn't even getting paid to do it. Hell, with my road map of scars people might pay me to put my clothes back on. I tried a new medication called Brisdell as well. It helped a lot but it made me so sleepy at night that I felt like I wouldn't wake up if the kids needed me so I stopped taking it. I might try again though. I wasn't in the best place emotionally at that time so it could have been a mix of issues. The Brisdell doesn't have any hormones so it is safe for us BRCA Mutants. Seems like a miracle drug if it didn't make me loopy and pass out. Literally had to take it while in bed or I might not make it there before I was falling asleep.
I had my first breast MRI in October. I was scared to death of that thing. I was scared that I would get sick from the dye, get sick from anxiety of being trapped and scared that they would find something. My doctor told me to take some anti-anxiety meds before so I did. I might have been a little too happy to show my sister the weird stickers they put on my nipples after because of it. I made it through the test though. Not without some anxiety but I made it. Test results came back pretty good. I have a few things they are keeping an eye on like always but everything looks good for now. Four months and I have to get a mammogram...piece of cake!
Mammograms don't bother me at all. Take your shirt off, let some nice lady put your boob in a vice and take pictures. No big deal. Then you get to see your images a little while you are waiting topless in a cold room to see if she needs to take additional pictures. The pictures after squeezing your breast flat as a pancake are amazing though. My breasts have never looked so good. If you have ever had one, you know what I mean. They are perfectly round and look even better than they did before breastfeeding 3 kids.
Get your mammograms ladies! It isn't nearly as bad as the horror stories. I have never had any pain while getting one. Ok sometimes its not the most comfortable position to be in but its not that bad. At least we don't have to turn our head and cough. We just have to turn our head while they squeeze our boobs. Believe me when I say a baby grabbing your boob and using it as leverage to pull themselves up hurts WAY worse! All moms know what I mean when I say that.
Well that is a little recap of the last year. Lots of crap but off to bigger and better things. The saying "what doesn't kill us only makes us stronger" is kind of crap though. I lived by that for a long time but I bottled up the emotions. I'm learning now to process the emotions and let myself feel the pain so I can move forward with my life and be that "stronger" person. This quote seems more fitting...
"We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us. The old skin has to be shed before the new one can come." Joseph Campbell
Thanks Laurell K. Hamilton for putting that in the most unlikely place for me to see. I needed it at that very moment.
Monday, September 23, 2013
Two Weeks Post Op
Surgery was Monday. Wow that was a crazy day!
Aunt Flo decided to make one last appearance. I started spotting around 11 AM. Irony at its finest. Well, Aunt Flo was about to get a nice little surprise.
I arrived at the hospital at 12:30 pm and checked in. We found a seat and waited for a minute before I see Dr R go to the desk. Turns out he was running ahead of schedule and wanted me in surgery early. I was rushed back to pre-op. Usually pre-op takes a while. You get undressed, give a urine sample, wait for the nurse to start an IV and talk to all of the doctors/nurses that will be with you during surgery. That process takes about a 1 1/2 hours or more. They prepped me in a little over 15 minutes. It was so fast paced I didn't have time to get nervous. I have no complaints about getting in sooner. It was nice to be too busy to think. My family got to come back for a few minutes before I was wheeled to surgery.
I met "Robbie the Robot" and the rest of the staff in the operating room. Everyone was very nice and introduced themselves to me while prepping. I move to the operating table and get some oxygen through a mask. I knew when it changed from oxygen to whatever gas you breathe to knock you out. The nurse said, "Think of your favorite place to be" and I was out.
Anesthesia is an odd experience. I've had my fair share of surgeries so its not new to me but it is still an odd feeling to lose that time. Its not like going to sleep and waking up knowing time has passed. It feels like you blink and everything is different. The only comparison is passing out or fainting.
My husband, Donnie said Dr R came out around 3:45 pm to talk to them. Surgery lasted about 2 1/2 hours and everything went perfectly. He didn't see anything that would indicate a malignancy but we would have to wait for the final pathology report to know for sure.
I woke up in post-op about 6:30 pm. The pain was excruciating and my tummy felt like it was going to blow contents from the previous week. It took a little while to get the nausea and pain under control. I was given large amounts of Zofran, Phenergan, Dilaudid and Morphine. If you know me you know how much I hate pain meds. I was welcoming the meds this time. The pain was pretty bad. Da Vinci surgery is supposed to be easier but it has been by far the hardest surgery I have had. Recovery may be less but waking up in that much pain was horrible.
They let Donnie come back once my pain and nausea was under control. It was about 7 pm and I was waiting to be wheeled to my room.
Donnie told me my cath bag had blue urine in it. I was pretty out of it from the meds so it didn't quite register so he took a picture to show me.
During the Cystoscopy they fill you with blue dye to check for leaks or damage to the bladder. Then they leave this lovely catheter in until you start running clear again.
I got to my room around 7:15 PM. I was still really out of it from the pain meds and I'm sure the boys that transported me to my room had a good laugh at my expense. I vaguely remember telling them that I was going to be nice and let them move me to my bed without any help from me. Moving was not an option for my body at that moment. Breathing was hard enough.
While my nurse was working on me and the nurses aid was getting me situated I was in and out. The nurse handed me the morphine button and explained that I have a constant morphine drip but I could push the button every 10 minutes to give myself a boost of morphine. I hit the button and passed out for a few minutes.
Donnie and our youngest son, Ash come into the room. They had left to get some dinner since Ash wasn't allowed back in post-op. I'm not sure why I felt like they had been gone for hours because in reality they were only gone for about 45 minutes. I remember being very mad at Donnie for leaving the hospital and telling him numerous times. He was a trooper and told me how sorry he was. Then he recorded a little video of me going in and out of a morphine coma. I was not aware of this video until a few days after surgery. Wow I was out of it!!
A little time passed with me pushing my morphine button every 10-15 minutes and falling asleep. I was so thirsty I drank a ton of water and Sprite. I tried eating some crackers but my mouth was so dry I couldn't swallow them. Saltines feel like cement in your mouth after surgery.
Around 10 PM my nurse came in with my abdominal binder and asked if I could get out of bed for a short walk. No I didn't want to but I know getting up and walking would keep me from getting so stiff. I also knew I wasn't getting that binder until I got out of bed and I wanted that binder BAD.
I walked down the hall with the nurse on one side and Donnie on the other. I felt extremely weak and light headed. The catheter was very irritating. I've had plenty before and was never bothered by them but this one was horrible. I was having spasms in my bladder and the cath wasn't draining properly so I had a horrible urge to pee almost constantly. The nurse would come in, move the cath around, put the bag flat on the floor and try to encourage it to drain. We did that several times throughout the night.
Donnie and Ash left around 11:00 PM to pick up my oldest son, Trent. He stayed at the hospital all night with me. It was nice to have some alone time with my oldest. He has a big heart even though he drives me crazy sometimes. I think its a requirement of a teen to drive their parents crazy.
The nurse came back in around 1 AM and asked if I felt like walking a little more. Trent helped me up to walk and we took a wheelchair for me to hold on to. This time was a little easier but I wore out quicker and felt extremely nauseous after just a minute or two.
Back to bed with my morphine button and some nausea meds. I slept pretty good for a few hours.
The nurse came in about 4:45 AM and removed the catheter. I was so happy to see that thing go! I was still having quite a bit of pain but decided I wasn't hitting that button again because I wanted to go home. I was still getting a steady drip of morphine but I wasn't using the boosts. I got up to pee a few times with help from the nurse and Trent. Apparently I was answering work emails but I honestly didn't remember doing it.
Donnie and Ash got to the hospital around 7:30 AM while they were taking my beloved pain meds off. They kept the IV in but no more meds going in. I got up to take another short walk and did better this time. I was feeling pretty good compared to the day before.
Dr R came in shortly after to tell me about the surgery and asked if I wanted to go home. He ordered my estrogen patch after I told him how emotional I had been. The nurse came in to put the patch on a little while later and I got up to urinate. I had to produce a certain amount of urine before I could be released. Peeing is a challenge. I'm not sure if the Cystoscopy caused it or its the swelling but I almost have to retrain my bladder to release urine.
My belly was pretty swollen that morning.
A little while later the nurse came in with my discharge instructions. Usually I get a page or two but this packet is 23 pages long. We read through it together and I signed my discharge paperwork. IV came out and off we go about 11:30 AM.
The binder made the ride home a little more bearable but it was still horrible. Every bump felt like knives twisting inside me. Donnie got me situated on the couch and I took a nap while he filled my prescriptions. Other than the cloudy brain and emotions I was doing ok that day.
The following day was Wednesday. Not a good day for me. I woke up stiff and couldn't get out of bed by myself. The nausea was horrible as well. I slept as much as I could and drank a lot of fluids. I took a very quick shower with the help of a friend. I was still covered in iodine and was itching pretty bad.
Thursday came and I felt a little better. Parts of my body hurt that I didn't even think possible but it was more of a soreness than pain. The nurse called from Dr R's office and had my pathology report in hand. All clear. No malignancies and no abnormal cells. Perfect Path Report! YAY!
Each day has been a different experience. Some days I feel like I'm progressing and some days I feel like I have taken a step back.
I saw Dr R on Thursday for my follow up appointment. We discussed the pain I'm still having and some of the issues I'm having. All is normal. He said it could take up to a year before I'm feeling back to normal. He removed the steristrips and all the incisions look great but one. He had to glue that one a tad and put a bandaid on it because it wasn't closed completely.
It has been two weeks today. I truly thought I would feel much better than I do. I took my binder off and haven't been wearing it the past few days. At first it hurt but now that I'm getting used to it being gone it seems better. I have a few internal stitches poking out. I always seem to have issues with that. My body just doesn't like them in there I guess.
Aunt Flo decided to make one last appearance. I started spotting around 11 AM. Irony at its finest. Well, Aunt Flo was about to get a nice little surprise.
I arrived at the hospital at 12:30 pm and checked in. We found a seat and waited for a minute before I see Dr R go to the desk. Turns out he was running ahead of schedule and wanted me in surgery early. I was rushed back to pre-op. Usually pre-op takes a while. You get undressed, give a urine sample, wait for the nurse to start an IV and talk to all of the doctors/nurses that will be with you during surgery. That process takes about a 1 1/2 hours or more. They prepped me in a little over 15 minutes. It was so fast paced I didn't have time to get nervous. I have no complaints about getting in sooner. It was nice to be too busy to think. My family got to come back for a few minutes before I was wheeled to surgery.
I met "Robbie the Robot" and the rest of the staff in the operating room. Everyone was very nice and introduced themselves to me while prepping. I move to the operating table and get some oxygen through a mask. I knew when it changed from oxygen to whatever gas you breathe to knock you out. The nurse said, "Think of your favorite place to be" and I was out.
Anesthesia is an odd experience. I've had my fair share of surgeries so its not new to me but it is still an odd feeling to lose that time. Its not like going to sleep and waking up knowing time has passed. It feels like you blink and everything is different. The only comparison is passing out or fainting.
My husband, Donnie said Dr R came out around 3:45 pm to talk to them. Surgery lasted about 2 1/2 hours and everything went perfectly. He didn't see anything that would indicate a malignancy but we would have to wait for the final pathology report to know for sure.
I woke up in post-op about 6:30 pm. The pain was excruciating and my tummy felt like it was going to blow contents from the previous week. It took a little while to get the nausea and pain under control. I was given large amounts of Zofran, Phenergan, Dilaudid and Morphine. If you know me you know how much I hate pain meds. I was welcoming the meds this time. The pain was pretty bad. Da Vinci surgery is supposed to be easier but it has been by far the hardest surgery I have had. Recovery may be less but waking up in that much pain was horrible.
They let Donnie come back once my pain and nausea was under control. It was about 7 pm and I was waiting to be wheeled to my room.
Donnie told me my cath bag had blue urine in it. I was pretty out of it from the meds so it didn't quite register so he took a picture to show me.
During the Cystoscopy they fill you with blue dye to check for leaks or damage to the bladder. Then they leave this lovely catheter in until you start running clear again.
I got to my room around 7:15 PM. I was still really out of it from the pain meds and I'm sure the boys that transported me to my room had a good laugh at my expense. I vaguely remember telling them that I was going to be nice and let them move me to my bed without any help from me. Moving was not an option for my body at that moment. Breathing was hard enough.
While my nurse was working on me and the nurses aid was getting me situated I was in and out. The nurse handed me the morphine button and explained that I have a constant morphine drip but I could push the button every 10 minutes to give myself a boost of morphine. I hit the button and passed out for a few minutes.
Donnie and our youngest son, Ash come into the room. They had left to get some dinner since Ash wasn't allowed back in post-op. I'm not sure why I felt like they had been gone for hours because in reality they were only gone for about 45 minutes. I remember being very mad at Donnie for leaving the hospital and telling him numerous times. He was a trooper and told me how sorry he was. Then he recorded a little video of me going in and out of a morphine coma. I was not aware of this video until a few days after surgery. Wow I was out of it!!
A little time passed with me pushing my morphine button every 10-15 minutes and falling asleep. I was so thirsty I drank a ton of water and Sprite. I tried eating some crackers but my mouth was so dry I couldn't swallow them. Saltines feel like cement in your mouth after surgery.
Around 10 PM my nurse came in with my abdominal binder and asked if I could get out of bed for a short walk. No I didn't want to but I know getting up and walking would keep me from getting so stiff. I also knew I wasn't getting that binder until I got out of bed and I wanted that binder BAD.
I walked down the hall with the nurse on one side and Donnie on the other. I felt extremely weak and light headed. The catheter was very irritating. I've had plenty before and was never bothered by them but this one was horrible. I was having spasms in my bladder and the cath wasn't draining properly so I had a horrible urge to pee almost constantly. The nurse would come in, move the cath around, put the bag flat on the floor and try to encourage it to drain. We did that several times throughout the night.
Donnie and Ash left around 11:00 PM to pick up my oldest son, Trent. He stayed at the hospital all night with me. It was nice to have some alone time with my oldest. He has a big heart even though he drives me crazy sometimes. I think its a requirement of a teen to drive their parents crazy.
The nurse came back in around 1 AM and asked if I felt like walking a little more. Trent helped me up to walk and we took a wheelchair for me to hold on to. This time was a little easier but I wore out quicker and felt extremely nauseous after just a minute or two.
Back to bed with my morphine button and some nausea meds. I slept pretty good for a few hours.
The nurse came in about 4:45 AM and removed the catheter. I was so happy to see that thing go! I was still having quite a bit of pain but decided I wasn't hitting that button again because I wanted to go home. I was still getting a steady drip of morphine but I wasn't using the boosts. I got up to pee a few times with help from the nurse and Trent. Apparently I was answering work emails but I honestly didn't remember doing it.
Donnie and Ash got to the hospital around 7:30 AM while they were taking my beloved pain meds off. They kept the IV in but no more meds going in. I got up to take another short walk and did better this time. I was feeling pretty good compared to the day before.
Dr R came in shortly after to tell me about the surgery and asked if I wanted to go home. He ordered my estrogen patch after I told him how emotional I had been. The nurse came in to put the patch on a little while later and I got up to urinate. I had to produce a certain amount of urine before I could be released. Peeing is a challenge. I'm not sure if the Cystoscopy caused it or its the swelling but I almost have to retrain my bladder to release urine.
My belly was pretty swollen that morning.
A little while later the nurse came in with my discharge instructions. Usually I get a page or two but this packet is 23 pages long. We read through it together and I signed my discharge paperwork. IV came out and off we go about 11:30 AM.
The binder made the ride home a little more bearable but it was still horrible. Every bump felt like knives twisting inside me. Donnie got me situated on the couch and I took a nap while he filled my prescriptions. Other than the cloudy brain and emotions I was doing ok that day.
The following day was Wednesday. Not a good day for me. I woke up stiff and couldn't get out of bed by myself. The nausea was horrible as well. I slept as much as I could and drank a lot of fluids. I took a very quick shower with the help of a friend. I was still covered in iodine and was itching pretty bad.
Thursday came and I felt a little better. Parts of my body hurt that I didn't even think possible but it was more of a soreness than pain. The nurse called from Dr R's office and had my pathology report in hand. All clear. No malignancies and no abnormal cells. Perfect Path Report! YAY!
Each day has been a different experience. Some days I feel like I'm progressing and some days I feel like I have taken a step back.
4 days post-op
6 days post-op still very swollen
9 days post-op swelling subsiding
I saw Dr R on Thursday for my follow up appointment. We discussed the pain I'm still having and some of the issues I'm having. All is normal. He said it could take up to a year before I'm feeling back to normal. He removed the steristrips and all the incisions look great but one. He had to glue that one a tad and put a bandaid on it because it wasn't closed completely.
11 days post-op
It has been two weeks today. I truly thought I would feel much better than I do. I took my binder off and haven't been wearing it the past few days. At first it hurt but now that I'm getting used to it being gone it seems better. I have a few internal stitches poking out. I always seem to have issues with that. My body just doesn't like them in there I guess.
14 days post op
the top incision that didn't close now healing nicely below a previous surgery scar
right side incisions that internal stitches are working out
some tape burn, my old appendectomy scar and scar above from gallbladder removal
I've come to the conclusion that my tummy is going to be a road map of stretch marks and surgery scars. I'm ok with it though. My first surgery made me worry about scars but I'm over it now. My scars show what I've been through. This surgery created less scars than what it could have. While the outside doesn't look that bad the inside is the same surgery. That was hard for me to understand at first. I really thought it would be easier than it has been but I'm slowly getting better.
My wonderful husband has been the nurse, the mommy and the daddy. I feel for him taking care of three children and me. He has done things for me that I never thought I'd ask of him. So much for modesty here. A man that will hold his wife while she cries in pain from constipation is a great man indeed.
That's one thing I wasn't prepared for. Constipation is a bad thing after surgery. My doctor explained it to me that the bowel is settling into its new home and the anesthesia and pain meds can cause it. I received specific instructions for bowel care after surgery. I followed them to a T and it still happened. I was so scared that I was going to end up back on the OR table with a bowel obstruction. I swore I would never drink Miralax again after that nasty bowel prep before surgery but here I am calling it my savior. For any woman preparing for this surgery...keep some Miralax on hand for these issues because it will very likely happen and it hurts.
The emotional aspect of this surgery is draining as well. I honestly thought hot flashes and night sweats would be my big issues but no. Its the emotions. I have always been a little bitchy. A tough girl and tomboy hanging with the boys. Take out my female parts and my female hormones and BAM...I'm a girl with girly emotions and crying about everything. What happened to me? Even my new improved "ovary" isn't helping that part.
My "ovary" HRT patch
I have to keep tissues around because I cry watching movies now. I have also had some issues with grieving my uterus. The womb that carried all my babies is gone. Knowing I can't have more children doesn't bother me as much as I thought it would. Its that my safe, warm womb that my children grew into strong little boys in is gone. It was dissected and scrutinized under a microscope then incinerated with all the other medical waste. The thing that held my babies was trash. My ovaries are gone too and I don't mind. Talk about irony, right!? Yes, my children started as eggs that came from those ovaries but those ovaries are scary. They have a high chance of killing me. Murderous little bastards can kiss my hormone patch wearing butt. Glad they are gone. (Yep, I'm menopausal and a tad crazy)
So, that's my recap from the past two weeks. Its full of ups and downs, emotions and some pain but do I regret it? Not one bit. I know in my heart that this is the right decision for me. Did the path report show those as healthy parts? Yes. Do I consider them healthy? Hell no! Did I have a surgery to remove healthy parts? Nope. I had a surgery to reduce my risk of an extremely aggressive cancer that is hard to monitor and catch early. I did this for my children because I don't want them going through what I went through with my mom. No I don't want to go through what she went through either but all-in-all it is my family that needed me to do this. Do the boys understand that? No. Will they ever understand that completely? I hope not!
Disclaimer: I support herbal supplements, homeopathic medicine, exercise and diet to aid in treating medical conditions but in no way feel those can take place of modern medicine. This is my opinion that I have come to through my research and my team of doctors that I trust wholeheartedly. I did not make these decisions without looking at alternatives and discussing these options with my team of medical professionals and my family. With that being said, support me or don't but don't bash me for the decisions I have made unless you have walked a mile in my shoes. Please be aware of your remarks to other women that might be in my shoes because it is hurtful to be put down for doing what we feel is right for us and our families.
Thursday, August 29, 2013
Synchronicity
Synchronicity is the experience of two or more events as meaningfully related, whereas they are unlikely to be causally related. "A Wink from the Cosmos"
I received a call yesterday around 4:30 pm from my oncologist's office. Mary, the surgery scheduler was calling to schedule my surgery. She asks if September 9th is ok. I scream in my head, "That's too soon!" but oblige and write the date on a Post-It note at my desk.
After writing down the date, I look at it and realize what day it is. Its the day my mom lost her battle with ovarian cancer. On September 9, 2013 my mom will have been missed for 16 years. She will have missed 16 birthdays, Thanksgivings, Christmases, Anniversaries and Mother's Days. We will have missed 5,840 days of having her here on this planet with us.
I heard very little of the conversation with Mary. I traced that date on my pale yellow Post-It note until it wasn't legible then wrote it on another to start the process again. I ended up catching the time of surgery before hanging up and dialing my sister, Missy. I tried to play it cool since I was in the office and surrounded by coworkers but as soon as Missy asked me if I knew what day it was, I completely lost it. Self control was out the proverbial window.
When you lose someone close, you will hear "I'm sorry" about a billion times. Although I know some people mean it, I get tired of hearing it. Sometimes I want to say, "What are you sorry for? The fact that I lost someone that means more to me than you do or are you sorry that you mentioned it and you don't know what else to say?"
Then there's the "it gets easier" comment. No it doesn't! You learn to hide it or to go on with your life without that person but the loss never gets easier. Some days go without a hitch but every holiday, birthday, or special occasion you will be reminded of the person that is missing in your life. Sometimes for no reason you will wish you could rewind and do something different to make the short time you had even more special. You will think about the arguments you had and wish you could take them all back. You will wish you chose that person to spend Friday night with instead of ditching them for your friends. You will cherish the moments that you had and remember the little things that seemed so menial at the time.
Our wedding day was one of those special times that I wished my mother could have been present for. In a way she was. I incorporated a few details that most people wouldn't have noticed. The people that knew her and loved her knew the symbolism of those details and that is what mattered to me.
My thoughts on having this surgery knowing what that day was 16 years ago? Everything happens for a reason and I have an angel watching over me.
I received a call yesterday around 4:30 pm from my oncologist's office. Mary, the surgery scheduler was calling to schedule my surgery. She asks if September 9th is ok. I scream in my head, "That's too soon!" but oblige and write the date on a Post-It note at my desk.
After writing down the date, I look at it and realize what day it is. Its the day my mom lost her battle with ovarian cancer. On September 9, 2013 my mom will have been missed for 16 years. She will have missed 16 birthdays, Thanksgivings, Christmases, Anniversaries and Mother's Days. We will have missed 5,840 days of having her here on this planet with us.
I heard very little of the conversation with Mary. I traced that date on my pale yellow Post-It note until it wasn't legible then wrote it on another to start the process again. I ended up catching the time of surgery before hanging up and dialing my sister, Missy. I tried to play it cool since I was in the office and surrounded by coworkers but as soon as Missy asked me if I knew what day it was, I completely lost it. Self control was out the proverbial window.
When you lose someone close, you will hear "I'm sorry" about a billion times. Although I know some people mean it, I get tired of hearing it. Sometimes I want to say, "What are you sorry for? The fact that I lost someone that means more to me than you do or are you sorry that you mentioned it and you don't know what else to say?"
Then there's the "it gets easier" comment. No it doesn't! You learn to hide it or to go on with your life without that person but the loss never gets easier. Some days go without a hitch but every holiday, birthday, or special occasion you will be reminded of the person that is missing in your life. Sometimes for no reason you will wish you could rewind and do something different to make the short time you had even more special. You will think about the arguments you had and wish you could take them all back. You will wish you chose that person to spend Friday night with instead of ditching them for your friends. You will cherish the moments that you had and remember the little things that seemed so menial at the time.
Our wedding day was one of those special times that I wished my mother could have been present for. In a way she was. I incorporated a few details that most people wouldn't have noticed. The people that knew her and loved her knew the symbolism of those details and that is what mattered to me.
My thoughts on having this surgery knowing what that day was 16 years ago? Everything happens for a reason and I have an angel watching over me.
Tuesday, August 27, 2013
iPeriod, I will miss you.
For years I've tracked my periods through an app on my iPhone. Thank you to whomever created this app. It predicts even the most unpredictable cycles and gives you a sense of security knowing you won't have one of "those" embarrassing accidents we have all come to know and HATE. I've never had regular periods or so I thought. I just don't know how to track a 35 day cycle one month and a 26 day cycle the next month to predict my period. Over the years I have come to love my trusty iPeriod. Today I got my 7 day reminder. (yep, now you all know my cycle) I usually dismiss the reminder and think nothing of it for a few days. This time was different. I realized that this could be my last period EVER. I don't know why I am mourning my period. I have always hated it but over the years it has been a part of me. So it got me thinking, will I cherish my last period for all the gross, crampy glory that it is? Or will I hate this last one just as much as I hated all the others?
If you didn't realize I said "this COULD be my last period."
I saw my oncologist, Dr. R, today. What an amazing appointment! I left feeling a sense of security I didn't feel before.
My sister went with me to the appointment. I wasn't ready to face the Women's Cancer Center alone. Luckily, I can always count on her support. Blood doesn't make you family but love does!
Dr. R spent lots of time with us explaining my risks and benefits. We discussed my scheduled surgery and the chances of a second surgery. Even though it is a small chance, it isn't a chance I am willing to take. The pathology that would be ran with a routine surgery just won't cut it in my situation. My right ovary is enlarged and has follicles. He said the entire ovary should be dissected and 100-150 slides ran in pathology. What that means is...they will take out my ovary, cut it into slivers and look at the slivers of ovary through a microscope to check for cancer cells, pre-cancerous cells or abnormalities. With routine surgery through a gynecologist they run about 15 slides AFTER surgery for BRCA positive patients. What that means for me...if one of the 15 slides comes back with anything I will be back in surgery with Dr. R anyway. And that means decision time for me. Do I want to take a chance of a second surgery or them potentially missing something because the section of ovary they chose for pathology is a good part and not a bad part?
Pathology will be ran in the hospital while I am in surgery. Yep, while I am asleep under "Robbie the Robot" they are going to run pathology. Then if anything does come back bad Dr. R can remove more of the surrounding tissue until I'm clear or as clear as we can get, worst case scenario. One surgery with Dr. R and "Robbie" and I will be done.
A co-worker nicknamed the Surgical Robotics machine Robbie the Robot and no matter what I do I can't get it out of my head. I keep thinking my 11 year old would want to become a surgeon when he sees this machine. Its the ultimate 3D video game experience. For those of you that don't know about surgical robotics, get ready to be impressed.
Recovery time COULD be lessened but the ability to get more with a higher level of precision is a huge plus. Dr. R performed three radical hysterectomies using the Da Vinci yesterday and all three of the patients are going home today. I hate hospitals so that is great news for me.
All-in-all I am happy with the decision to let my oncologist do the surgery because he does this more often than Dr. P. Love Dr. P to death but when your life is on the line you want experience. To your surprise, I'm sure (insert sarcastic eye roll), there is a large amount of human error in surgery. Most of those errors can be fixed with no ill effects but one small piece of tissue left in my body could mean my death. My mom's doctor left one ovary during her hysterectomy and that is the one that killed her. I'm not willing to risk it. Ovaries aren't the only thing that can be affected by ovarian cancer. The blood vessels connected to the ovary and surrounding tissue are all susceptible. Why take the chance? Dr. R is taking it all out.
We talked more about hormone replacement therapy (HRT) and the benefits vs risk. Studies are so inconclusive that doctors shy away from it for BRCA positive patients. Many doctors say no hormone replacement therapy because if a woman ends up with breast cancer 15 years later, the recommendation for HRT can't bite them in the white coated ass. I've done my research on this and was highly impressed when Dr. R was reciting statistics from studies I have read. The problem is all the studies done are on postmenopausal women or a small case study that isn't a big enough sample to make much difference. 20 years from now there will be a huge medical "told you so" from one side and the other side will be hanging their heads in shame. At this point, we don't really know what the long term risk is.
I think I have decided to start on a low dose, estrogen only patch for a few months and slowly wean off of the hormones completely. There are benefits and risks with either and becomes a personal decision for the patient. Quality of life is a big part of that decision. I am removing most of my chance of ovarian cancer but if I'm miserable and don't feel like myself, is the surgery successful? The good thing about HRT is it isn't set in stone. I can try it one way, switch and then switch back if one isn't working for me.
Today's appointment was great. I got lots of answers to questions I have and made some big decisions that I feel are right for me. I cancelled my surgery with Dr. P and I'm waiting for the call to schedule my surgery with Dr. R. I feel like I'm making lots of progress so far. I'm not as scared as I thought I would be while planning a surgery and talking about cancer so often. I have a great family supporting me and helping me through this. I'm not sure I could be so strong without them.
If you didn't realize I said "this COULD be my last period."
I saw my oncologist, Dr. R, today. What an amazing appointment! I left feeling a sense of security I didn't feel before.
My sister went with me to the appointment. I wasn't ready to face the Women's Cancer Center alone. Luckily, I can always count on her support. Blood doesn't make you family but love does!
Dr. R spent lots of time with us explaining my risks and benefits. We discussed my scheduled surgery and the chances of a second surgery. Even though it is a small chance, it isn't a chance I am willing to take. The pathology that would be ran with a routine surgery just won't cut it in my situation. My right ovary is enlarged and has follicles. He said the entire ovary should be dissected and 100-150 slides ran in pathology. What that means is...they will take out my ovary, cut it into slivers and look at the slivers of ovary through a microscope to check for cancer cells, pre-cancerous cells or abnormalities. With routine surgery through a gynecologist they run about 15 slides AFTER surgery for BRCA positive patients. What that means for me...if one of the 15 slides comes back with anything I will be back in surgery with Dr. R anyway. And that means decision time for me. Do I want to take a chance of a second surgery or them potentially missing something because the section of ovary they chose for pathology is a good part and not a bad part?
Pathology will be ran in the hospital while I am in surgery. Yep, while I am asleep under "Robbie the Robot" they are going to run pathology. Then if anything does come back bad Dr. R can remove more of the surrounding tissue until I'm clear or as clear as we can get, worst case scenario. One surgery with Dr. R and "Robbie" and I will be done.
Recovery time COULD be lessened but the ability to get more with a higher level of precision is a huge plus. Dr. R performed three radical hysterectomies using the Da Vinci yesterday and all three of the patients are going home today. I hate hospitals so that is great news for me.
All-in-all I am happy with the decision to let my oncologist do the surgery because he does this more often than Dr. P. Love Dr. P to death but when your life is on the line you want experience. To your surprise, I'm sure (insert sarcastic eye roll), there is a large amount of human error in surgery. Most of those errors can be fixed with no ill effects but one small piece of tissue left in my body could mean my death. My mom's doctor left one ovary during her hysterectomy and that is the one that killed her. I'm not willing to risk it. Ovaries aren't the only thing that can be affected by ovarian cancer. The blood vessels connected to the ovary and surrounding tissue are all susceptible. Why take the chance? Dr. R is taking it all out.
We talked more about hormone replacement therapy (HRT) and the benefits vs risk. Studies are so inconclusive that doctors shy away from it for BRCA positive patients. Many doctors say no hormone replacement therapy because if a woman ends up with breast cancer 15 years later, the recommendation for HRT can't bite them in the white coated ass. I've done my research on this and was highly impressed when Dr. R was reciting statistics from studies I have read. The problem is all the studies done are on postmenopausal women or a small case study that isn't a big enough sample to make much difference. 20 years from now there will be a huge medical "told you so" from one side and the other side will be hanging their heads in shame. At this point, we don't really know what the long term risk is.
I think I have decided to start on a low dose, estrogen only patch for a few months and slowly wean off of the hormones completely. There are benefits and risks with either and becomes a personal decision for the patient. Quality of life is a big part of that decision. I am removing most of my chance of ovarian cancer but if I'm miserable and don't feel like myself, is the surgery successful? The good thing about HRT is it isn't set in stone. I can try it one way, switch and then switch back if one isn't working for me.
Today's appointment was great. I got lots of answers to questions I have and made some big decisions that I feel are right for me. I cancelled my surgery with Dr. P and I'm waiting for the call to schedule my surgery with Dr. R. I feel like I'm making lots of progress so far. I'm not as scared as I thought I would be while planning a surgery and talking about cancer so often. I have a great family supporting me and helping me through this. I'm not sure I could be so strong without them.
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