October 20, 2013
I never thought I would be afraid of the shower but apparently I have something new to be hesitant of. Good news is, I made it through without pulling on my incision or falling (probably my biggest fear). My incision looks great!... well as good as 20 staples down my belly can look... and the fact that they're straight with all the swelling going on is a tribute to Dr Labredo.
I had a friend come over and hang out for a while tonight, which was awesome and now it's time to go to bed. I just wanted to say that I appreciate everyone's thoughts and prayers and support!
Brynn
Holy Hot Flashes- October 22, 2013
So I'm 5 days post-op and my hormones are already on a rampage. I had my first hot flash last night and it was NOT a pleasant experience. They say that menopause is a lot tougher when it's induced early by a hysterectomy, but even a "natural" hot flash has to suck. It's like suddenly a flush from the pit off your stomach out, and suddenly you feel like you're sitting in a dry sauna. I can't wait to start my hormones replacement therapy and hopefully get rid of this. I apologized a week or so ago to the guys at work, in advance, for any mood swings I might have if they had to do a total hysterectomy but so far so good on that front.
Here's to hoping that the most dramatic thing that happens tonight while I'm sleeping is my alarm going off to remind me to stay on top of my pain medication.
Goodnight all, and thank you for the support!
Brynn
My Little Blessing- October 22, 2013
So I always knew that Rylie was a blessing, she's absolutely amazing. She was a surprise too, and I think that I know why now. If I had waited until I was in my mid 20's, found the perfect guy, had a normal engagement and then tried to start a family, I might never have had kids. I have said that if I could have had Rylie, exactly as she is, but 5 years later, it would have probably made me a better parent and made a few things a little easier but now I'm so very glad it didn't happen that way. I'm going to go hang out with my little blessing and enjoy my time off. Hope everyone has a great day Brynn
Thank You, Kelly- October 22, 2013
I wanted to take a minute to thank Kelly for taking such good care of me. We have definitely had our rocky points in the last 10 years but all of that is history and I think we are connecting in a great way. I appreciate the love, care and yummy food and you are definitely making this a lot easier to deal with. I love you
Brynn
FMLA etc... October 24, 2013
My aunt asked if I was on medical leave. Not really. My employer doesn't offer FMLA or Short Term Disability until I've been employed for a year and I left Mayo in July. My job will be waiting for me when I'm able to go back, but only because it was my employers choice to keep it open. Guess they like me or somethin ha.
PS- thank you Judy, I like my hair like this and I was trying to grow it out. o well :) when I get my "skull prosthesis" I'm going to have Disney Princess hair, long, red and awesome. I figure if I get to pick, it's going to be everything I ever wanted ha ha. See attached photo for my idea
Staples and Airplanes- October 25, 2013
SO two good things happened today. I got my staples out and my Momma flew out to visit me for 10 days. Instead of my super sexy metal staples, I have a big line of Steri-strips down the center of my belly, which is a lot easier to deal with as far as standing up straight etc. My Momma flew into Omaha this morning and Kelly picked her up. Im definitely looking forward to hanging out and spending time while we wait for my final pathology to come back from the Mayo Clinic so we can get started on our plan for chemotherapy and anything else we need to do.
Have a great weekend!
Brynn
Pretty Blonde Parrot- October 26, 2013
Ya know, I always knew that Rylie was a sponge. She has repeated things that I would prefer not to hear, a la singing "this is f*cking awesome!!" on a Disneyland bus, but the few bad instances are well worth an open, communicative relationship. I have always encouraged Rylie to be outspoken, talk to me about anything and tell me if she's worried.
Yesterday, my dad and Kelly told me that Rylie told them she was worried about my tumor. Specifically, she was worried that my tumor would spread and make me sick again. We have been trying to be very careful not to discuss the heavier stuff, like the possibility of recurrance or nasty chemotherapy side effects. She told me that she hasn't been sleeping very well for a few days because she's worried about me, which breaks my heart. I had a very frank discussion with her about everything, that I had surgery on my tummy to take the tumor out and some of the organs that the tumor likes to spread to and that we were going to start another type of medicine to make sure it doesn't come back. Her sweet baby voice asking "But what if it DOES come back, Momma" about made me cry.
Talking to Rylie about it was much harder than telling anyone else for sure. I just hope that I was able to sooth her fears and hopefully she will talk to me about anything she's worried about and everyone will remember that we have a very worried little parrot in the house.
Thank you guys again for all the love and support
Brynn
Final Pathology- October 29, 2013
We finally got my final pathology back yesterday. Because this kind of cancer is so rare, and only one doctor in the area has ever actually seen a patient with it (ever!) Dr Hunt sent my tumor to the Mayo Clinic to be analyzed.
It definitely was a Sertoli-Leydig malignant ovarian tumor. Luckily, it was contained to the left ovary, everything else that they removed came back negative. They think that the tumor ruptured during surgery only, not a few days prior like we thought, so that cuts down on the exposure time for all the cancer cells floating around in my pelvis. We will still have to do chemo, but depending on the recommendation from the cancer center in Omaha, it might cut down on the amount of chemo I have to do (fingers crossed)
We have an appointment on Friday to see the gynecological oncologist in Omaha, which is great because my mom can come with us before she leaves. I will update everyone when we get their input in Omaha.
I am seriously overwhelmed by everyone's support and prayers and I appreciate it immensely!
Brynn
Sneezing- October 29, 2013
For those of you who have never had abdominal surgery, let me tell you that there is nothing worse than sneezing at the moment. Coughing can be controlled a little, laughing hasn't hurt for a few days but I have sneezed exactly twice in 2 weeks and I thought I was going to die right there. So keep your fingers crossed that I don't run into any cats or corn pollen (I know, terrible decision to move to the Midwest being allergic to such things)
Hope everyone is having a great day
Brynn
Corny 80's Love Songs- October 29, 2013
So... we are sitting here trying to figure out how to fix the TV and my mom and Kelly are playing " name that 80's song". And singing along. I'm just going to hide on my corner of the couch... perhaps this is a lesson in therapeutic song?
2 weeks post-op- October 30, 2013
So I have been in pretty good spirits and I'm optimistic and maintaining my sense of humor (twisted as it is ha). Well I finally had something make me cry, but not in a bad way. I got a call from one of the guys I work with and he told me that they asked our administration if they could donate some of their PTO so that I can hopefully have a fairly normal paycheck until I come back to work. My boss and some of our medics and nurses have pitched in, which is unbelievable. I don't even know what to say besides thank you so very much. I am a very very lucky woman and all of you have been amazing.
I love you
Brynn
Happy Halloween!- October 31, 2013
Happy Halloween everybody. Usually Halloween is one of my favorite holidays to work, mostly due to calls like "you're needed for an intoxicated male, running on Oakland wearing a pink skirt and Viking helmet. Pt states he needs to find somewhere to fly and caller started she thinks He's suicidal... PD en route".
This year I don't get to chase drunks or patch up the guy who took his Halloween prank a little too far. I will be taking my beautiful little girl trick-or-treating, which is way better.
Have an awesome holiday, stay safe out there and eat some candy (or a drink or two for all my friends partying tonight ha) for me...
Brynn
GYN Oncologist meeting- November 1, 2013
Patience is a virtue, virtue is grace, put them together you get a happy face! Well kinda.
We met w Brynn's gynecological oncologist today in Omaha and the bottom line is we have to wait another week to know the treatment plan.
This tumor is rare and they have to consult and collaborate with a few more Doctors before they decide in a treatment plan. Chemo is likely since the tumor is "poorly differentiated". Another surgery is possible as well! Brynn was not thrilled with this option! Because they would want to open her up again instead of laparoscopically. Apparently the Dr at St Luke's didn't remove any lymph nodes.
Brynn is being very brave and positive and we all are proud of her. I have no doubt she will beat this. Keep up the prayers!
-Jim, Michelle and Kelly.
Meeting day- November 7, 2013
So today is the day that Dr Nadkarni is presenting my case to Methodists Tumor Board. While I'm looking forward to finally having an answer and a plan, I have to admit that I feel a little bit like a science experiment. Don't get me wrong, I have no problem being the teaching guinea pig. I've let more than one student poke around on me in the last few weeks and I do it gladly. It's just not a fantastic feeling to be diagnosed with a type of cancer so rare that it takes three hospitals, God knows how many doctors and a meeting dedicated to weird tumors to figure out what to do with me ha ha.
I guess I'm really hoping for two things-
1- that we do the treatments and I never have to deal with it again (thigh I'm prepared for the possibility that this may not happen)
2- that they learn something from me that will help the oncologists understand more about this type of cancer. Knowledge is definitely power.
If I can have those two things, I will be on cloud 9 when this is over.
I will update everyone as soon as a get a call about what the plan is. I appreciate all of you, all the thoughts and prayers so thank you again
Brynn
Not the news I was hoping for- November 8, 2013
After consulting with her partners my gynecological oncologist wants to do another open laparotomy and re do my staging, basically go on a hunting trip through my abdomen to make sure there aren't any tumors or bad cells attached to any organs, then start the chemotherapy regimen.
We are getting a second opinion from the head of gynecological oncology at Rush University cancer center in Chicago about whether the surgery can be done via laparoscopy, which would let me get back to my life several weeks faster and allow us to start chemo sooner. Hopefully we will have a recommendation from Chicago on Monday or Tuesday.
If the consensus is open surgery, I guess we do what we have to but I can definitely say I'm hoping for no open laparotomy.
I am finally not in pain all the time, I can pick up Rylie and sneeze and a few weeks from going back to work and getting some normalcy back... and I don't really want to go back to Surgical Square One.
Hopefully this other doctor is experienced enough and comfortable enough to do the staging without an open procedure. That's what I pray.
Love ya
Brynn
Breakfast of Champions- November 15, 2013
So I have a PET scan this morning. I haven't eaten anything but high protein food since yesterday (I'd kill for something sweet) and just got injected with my "radioactive material". If my PET scan comes back ok, there will be no surgery and we will go straight to chemo. Dr Gergais (the doc from Chicago) would like to see me start chemo on Monday, but I'm not sure what the turnaround can be with reading the PET scan and planning it all out. I will absolutely let everyone know how my meeting with the medical oncologist goes and what the plan is when I figure it out.
Have a great day!
Brynn
Finally a plan- November 15, 2013
We met with Dr. Rao of the Nylen Cancer center today and Brynns scan looks good. A radiologist will review it Monday and if all clear Brynn will start chemo Monday. She will be admitted to Mercy medical center for five days. Dr Rao is going to consult with Dr Guirguis this weekend and will determine the number of rounds of chemo that Brynn will need. We have heard 2-6 the fewer rounds the lower the risk of long term side effects. Please say an extra prayer for God to give Brynn strength through these treatments. I'm very proud of the strength and positive attitude she has shown these past few weeks! Jim
Lasix and other drugs- November 18, 2013
So apparently they're going to give me Lasix every day after my chemo. For those of you who have never had Lasix, it's a powerful diuretic. Imagine the longest night if inebriation you ever had (not that any if us have ever gotten really drunk ha). The second you decide that you've had too much to drink and have to run to the bathroom every five minutes after that, is about how I feel right now.
Today I have had-
Versed
Propofol (I think that's what they said)
Ativan
Enough Zofran to choke a horse
Decadron
Etopside (chemo #1)
Cisplatin (chemo #2)
Lasix
I think if you separated my blood right now you could stock a pharmacy.
Besides being sore, I feel pretty good so far. I'll keep y'all updated
Love ya
Brynn
Linebacker- November 20, 2013
You know, when I was a little kid, my dad used to tease me that I could be a linebacker for the Raiders (because I was like a bull in a china closet) ... at the moment I feel like one. I have become very protective of my new chemo port and IV line to it.
The Power Port is embedded under the skin of my chest a couple inches below my collarbone and sewn into my pectoral muscles. The line is threaded over my collarbone, sewn into my jugular and passed into the vena cava, going directly to my heart. The likelihood of hurting it without direct force is pretty slim but if the line gets pulled out wrong, it could cause problems. So I'll continue to guard it like a pitbull and enjoy feeling ok while I can
Hope everyone having a great week!
Brynn
Labs- November 23, 2013
So I got my labs back this morning and they look pretty darn good. My white blood cell count is at 10 (which is very good and suggests that my immune system hasn't been compromised a while lot yet) if it gets down below 3, it's considered low. My platelets are good as well. The only thing that is a little low is my red blood cell count, but it's pretty close to normal.
Overall I feel pretty darn good for starting day four of chemo. How your day goes well too!
Brynn
One day at a time- November 24, 2013
Brynn can't keep anything down so.... They won't release her until she can eat and keep it down. She's on 5 different drugs to help her. We pray that God will give Brynn strength and her doctors wisdom to get her well enough to come home soon. Two days until she has bleomyicin treatment again. She's staying positive and your prayers and messages are helping her very much!
Jim
Interesting medical advice- November 27, 2013
So I have never heard a doctor encourage a patient to eat terribly... until now. My oncologists exact words were "Brynn, I want you to eat crap. You need to eat junk food; pizza, cheese, candy, chips, soda. If it's high calorie, eat it." Now before anyone gets on a jealous kick, realize that even formerly delicious crap food doesn't taste good at the moment ha ha (most everything has a flat, metallic taste)
And of course, there's rhyme and reason to the bad food diet advice. Basically if it has calories and it's something you can keep down for any length of time, it's a winner. When I was in the hospital, I would eat and then about four hours later be sick and frankly amazed at the amount of food still in my stomach to make a reappearance. A couple months ago I would have been thrilled to have lost another 11 pounds but as it stands, this is not a good thing when you're doing chemo.
I am definitely looking forward to Thanksgiving tomorrow, both the family time and really good (perfectly calorie rich) food and I hope everyone has a wonderful holiday. I know I definitely have a lot to be thankful for this year.
Love ya
Brynn
Day 13- November 30, 2013
And on the 13th day, when the Zofran just wasn't cutting it, the oncologist said "here, take this Ativan". And thereafter the nausea passed and it was good.
Hairstyle Courtesy of My Oncologist- Dec 6, 2013
So on Tuesday, my hair started deciding that we should part ways, and by Thursday night I didn't want to deal with it anymore so my dad helped me shave it all off. I appreciate the help because it sure want as easy as I thought it would be. I knew it was coming but that first time looking in the mirror was still more than a little weird.
I am usually warm all the time and I never wear a hat in the winter unless I'm at work (sorry Momma... just be happy I wear gloves ha ha). I have a feeling this is not an option anymore. My new hair looks super cute and nice, and I even have a wig that is just for fun (I mean, since I can do whatever I want with it, I might as well have a "wild" option)
Rylie was quite distraught over the idea that the chemo would make me "have no hair like Papa-bear (my dad)" at first but she was a very good helper last night and finally decided that it was just funny, which was a relief for me. Overall it will take some getting used to but it will grow back. And I might even leave it blonde for a while for my parents ha.
Hope everyone had a great week and has a great weekend, stay warm
Love ya
Brynn
The Side Effects- December 14, 2013
Brynn's phone took a dive off the table two nights ago (an apparent cry for help because of exhaustion and over use) It's out of commission for a few days. So she cannot communicate on it as she would like! So we thought we would update her family and friends.
In the last 24 hours the effects are being felt. She hasn't been able to keep food down, although I just brought her a Taco Bell burrito to try to keep down. If she vomits it up there will be no way to tell if it was the chemo or just Taco Bell food.
A woman came up to Brynn last night and told her that Brynn had inspired her son and has given him hope. Hunter (18) is here for his first round of chemo and is scared and a little hopeless. Earlier this month He didn't see any point in going to school anymore. Brynn wrote him a letter of encouragement and his mom said it really helped him. He now wants to be a fire fighter and is focused on his future instead of his illness and his mother attributes his attitude change to Brynn's encouragement and support.
I'm very proud of Brynns desire to help other people in tough situations. God is definitely working in Brynns life. Please keep up the prayers and support Brynn appreciates it and says to say loves you all!
Well, that was fun...- December 23, 2013
First things first, I'm fine. Secondly, as much as I like the ER nurses at Mercy, I did not want to spend four hours with them tonight. I was hanging out and laid flat on my back, which resulted in a pressure in my throat and the inability to swallow. I was also having bad chest pain laying flat. When I sat up, after a few minutes I felt normal. I called Dr Rao and she told me to go to the emergency room. They drew blood and they were concerned that I might have a pulmonary embolism based on my symptoms and lab results. For those of you who don't know, a pulmonary embolism it's a blood clot in your lungs and it can kill a person very quickly if it's large. I was pretty nervous while they did a CT angiogram but it came back normal. So did my EKG. Basically, there's nothing obviously wrong and I just can't lay on my back for the time being. Weird but I'm glad it's not something bad. I'm headed to bed, everyone stay warm! Brynn
Happy New Year!!- January 1, 2014
The last few months of 2013 have been full of trials, pain and nausea but I am three days from being done with my chemo and ready to get on to my new cancer-free, much improved life. (can't get rid of that cancer patient label yet, but I will)
This year had shown me that family problems can be suddenly so unimportant and we can be closer than ever. I learned who my true friends are and who will love and support me through anything.
I love you and I'm so grateful to have such an amazing support system, wonderful friends and family, a beautiful, healthy, sweet daughter and thank God that I was lucky enough to catch my cancer early and be around to enjoy my silver lining.
DONE... Almost- January 7, 2014
I have once again been freed from the confines of Mercy Medical Centers Oncology unit, for the last time! I have two more 10 minute injections of chemo and I am officially done with treatment.
Nothing tastes right, I'm tired as heck and nauseous but I am so happy to be done, I could cry!
No comments:
Post a Comment