Monday, December 31, 2012
Sunday, December 30, 2012
The one thing they don't tell you when you are declared "N.E.D" (No Evidence of Disease - aka Remission) is what it will be like to watch others lose their battles. I haven't known many people with cancer, and those that I had were very old when diagnosed. Not that it makes their deaths less sad, but it seems less tragic when someone dies in their 80s versus their 50s, or 30s, or younger...
But once you are diagnosed with cancer, you become part of a club where no one asks for membership. And you make connections through this membership. In my case, they were actually re-connections. Around the time I was diagnosed, I was told of two other people I knew who had gotten similar news. One a beloved professor with breast cancer, the other a classmate from college with leukemia. Both cancers considered relatively "curable" in these days. However, both have died within the last three months after relatively short but extremely brave and faithful fights. And I am awash with mixed emotions that I don't really know how to handle.
I know how I should feel...Grateful.
And I am, believe me.
I have almost grown sick of how many times I've used the words "thankful" and "grateful" in this blog over the last year. But it truly is the emotion that I feel most often. I have soaked in the last 12 months with the kind of awareness and joy that I think is unique to one who was told it would be a much different year. I was overwhelmed many time this year with the recognition of just how blessed I was to experience things others take for granted. A birthday surrounded by friends, multiple vacations to see loved ones, a body healthy enough to run for miles, snuggling new babies...I could go on and on. I am so very grateful.
But when I heard about these deaths, I also was awash with guilt. A fellow survivor put a name to it for me - Survivor's Guilt. I thought that was something reserved for war veterans or plane crash survivors. But it is completely appropriate for what I am feeling. Why have I survived and not them? That is the overriding emotion I feel.
My friends and family have tried to console me in the only way they know how.
"God has big plans for you"
"There are still things He wants you to do here"
And I know that they mean well. I know that they are so grateful that I am still here. But I can't help but feel uncomfortable. Didn't Jenny deserve to get married and have kids? Didn't Deb have plans to watch her daughter graduate from High School? Jenny wanted to run a marathon, why didn't she get a chance to run her race and I did? Heck, I didn't even have to go through chemo. I complained last week about how I broke my brush, pulling it through hair that reaches well down my back.
The guilt would be crushing, absolutely unbearable, if not for one thing.
My faith that God does have a plan, and His plan always works for the good of those who love him. I know that these loved ones who have gone on before me, were believers in God. I know this because they made it clear, every single day of their struggle here on earth. And because of our faith, I know that they are fully healed right now. They have been welcomed home by Jesus and will never suffer again. And for whatever reason we are left here to continue our lives on earth, God has a plan for that as well.
I have an appointment tomorrow morning with Dr. R. I had my follow up ultrasound and blood test last week and will learn the results tomorrow. I, of course, would welcome any and all prayers that they continue to come back clear. But tonight, I am resting in the assurance that it all rests in God's merciful hands. And that one day, whether here or in heaven, I too will be completely healed.
Here's to a Happy New Year, this one has been too sad. I pray that each of you recognize the blessings in your own lives this year. Hold your loved ones a little tighter and soak up the joy.
Bring on 2013.
Wednesday, December 26, 2012
It was GLORIOUS.
The only thing we did have planned was going to see Les Miserables. Les Mis is my favorite musical to see live and this cast did not disapoint. Great singing, great acting ... I sure hope the upcoming movie is as good!
Other than this show, we spent most of our days eating delicious seafood and our evening lounging around or occasionally catching a movie. It was great to really relax and enjoy some downtime. I even went for a few runs and relished the warm weather since it was already pretty cold in Chicago by then. All in all, it was a great vacation and I actually returned home feeling rested and refreshed!
I gotta remember to take trips like this more often. :)
Sunday, December 23, 2012
So, back in July my friend Laura and her sweet kiddos (and sister in law) came down for a visit! Laura and I went to college together and I despite the distance between us, I still count her as one of my dearest friends. I love whenever we are able to get together.
One of the days she was in town, our friend Jill, her kiddos, and I met up with Laura's troop at the Shedd Aquarium. I LOVE the Aquarium! It is totally my favorite destination in Chicago...
We had a great time checking out all the different exhibits and enjoyed the Dolphin Show. The jellyfish exhibit was one I had been wanting to see - so cool.
The whole day was so nice and a lot of fun was had by all! Is it summer again yet?
(PS: Laura - Its totally my turn to come visit you!)
Thursday, December 6, 2012
Tuesday, December 4, 2012
I am so excited whenever one of my friends is pregnant! I love everything about watching their belly grow, feeling little kicks and ultimately snuggling their newest little one! My best friend Melanie let me try out some new photographer skills to take some maternity pictures of her just a few weeks before her 2nd baby!
We headed on out to the hospital and expected to get there just as the baby was born - it took longer than expected but we were so excited to meet Luca's new baby sister!
Dear sweet Bella - I love you!
Sunday, December 2, 2012
Speaking of goals...
I ran my first 5K!!!
Also, I highly recommend running a race that incorporates cupcakes - cause its pretty hard to take yourself too seriously when there are cupcakes involved!
|Final time: 1:00:16||(Adjusted cupcake time:||54:16)|
Sunday, October 21, 2012
But I did have a very important doctor appointment a couple weeks ago. Another round of ultrasound and blood test and then meeting with Dr. R. Except this time, I didn't even get to see Dr. R! But I did see his PA, who gave me the best news I've gotten since January.
My CA-125 is back down to 16!!
This is EXTREMELY exciting!!!
The two things we have been watching closely are the cyst to see if its growing and my CA-125 level to see if that number is increasing. A few months ago, it seemed like it might be - which is why I've had follow ups every 1-2 months instead of the typical 3 months. Then it kind of leveled out two months ago, but was still too high for my liking.
But now it is squarely back in "normal" range - and the fact that I don't have to see Dr. R again until NEXT YEAR (January) is just icing on the cake.
After that doctor appointment, I realized just how much I'd still been putting parts of my life on hold since last year. Not completely on hold, but still being extra cautious. Not making real long range plans and holding my breath every month to see if any plans I had made would have to change.
Now I feel like I can make some real life decisions. Some are already in the works and others are still being mulled over. But mostly, I just feel like I'm breathing easier and that is a beautiful feeling!
PS- I had to postpone my first 5k - but it coming up soon!
Friday, September 14, 2012
This was started a few weeks ago, I'm now in week 4 of the program. I've also signed up for my first 5K - the RocStar 5K - which supports Ovarian Cancer. I'm not sure I'll actually be able to run the entire race by then (I won't be completely through the C25K program by that time) but I am excited! My friend Lisa is running with me and has promised not to leave me behind! I am definitely no where near fast yet. But I do feel so very accomplished every time I finish a run. Its amazing to me that 10 months ago I was diagnosed with cancer and 8 months ago I could barely stand after two major surgeries. I never could have imagined back then that I would be at this point today.
Wednesday, September 12, 2012
Before I get further into my experience, here are the basic facts about the most common types of treatment for ovarian cancer:
1) Surgery - Surgery to remove the cancerous growth is the most common method of diagnosis and therapy for ovarian cancer. It is best performed by a qualified gynecologic oncologist.
2) Chemotherapy - Chemotherapy is the treatment of cancer using chemicals (medications) that travel through the bloodstream to destroy cancer cells or stop them from growing both in and outside the ovaries. Chemotherapy is used in the majority of cases as a follow-up therapy to surgery.
3) Radiation Therapy - Radiation therapy uses high-energy X-rays to kill cancer cells and shrink tumors.
But according to my first doctor, I needed a full hysterectomy and chemotherapy. Immediately. And by immediately, I mean that she originally wanted me back in the OR within a few hours of telling me I had cancer. Without giving me time to process. Before my mom or any of my support system could be with me. Without even discussing any other options.
Luckily, my first response was panic and to dig in my heels.
For the next three days, my first doctor pressured me around the clock to allow her to take me back into surgery. She told me that I could be developing an infection and go into septic shock because the cyst had ruptured. She told me that the cancer could be spreading as we spoke. She told me no other doctor would tell me any differently. She told me it would take weeks to get a second opinion and that was time I didn't have to waste.
I was so very scared.
But I refused to accept her words and sought a second opinion anyway. Thankfully, I was able to get into to see Dr. R that same week. And we all remember his famous first words right?
Even after my first appointment with him, I had to go back to my first doctor for a incision check. She told me that Dr. R was misleading to me, that a hysterectomy was unavoidable. That there was "no being conservative" with ovarian cancer.
I felt so confused and hopeless.
Because of her words, when I went into surgery I was convinced that I would not be coming out with my reproductive system intact.
But she was wrong.
So, here are my 2 cents - for anyone out there who has recently been diagnosed with ovarian cancer. (Really for anyone who has recently been diagnosed with ANYTHING.)
Seek a second opinion.
For ovarian cancer, it is imperitive for you to be seen by a GYN Oncologist. For anything else, seek out specialists in whatever you are facing. Medicine is so specialized these days - find someone who really knows what they are talking about. I don't believe my first doctor was purposfully lying to me or leading me astray. I believe she didn't know any better. In her experience, women with ovarian cancer are almost always in a late stage and always require a hysterectomy.
But if I had believed her and followed her direction, I would be absolutely devestated right now. Not only because I had lost my ability to bear children. Not only because I would be in menopause at 32. Not only because I would be undergoing chemotherapy.
But because it was ultimately unneccesary.
So, please do your own research. Be your own advocate. And seek out a second opinion.
You will not regret it.
Monday, September 10, 2012
Ovarian Cancer is known as the the disease that "whispers" because its symptoms are often subtle and go unrecognized for far too long. In an effort to encourage advocacy, I'm going to list the common symptoms and then talk about my own experience.
Symptoms of ovarian cancer:
Abdominal pressure, fullness, swelling or bloating
Pelvic discomfort or pain
Persistent indigestion, gas or nausea
Changes in bowel habits, such as constipation
Changes in bladder habits, including a frequent need to urinate
Loss of appetite or quickly feeling full
Increased abdominal girth or clothes fitting tighter around your waist
A persistent lack of energy
Low back pain
So, did I have any of those symptoms? Its so hard to say, hindsight being 20/20 and all that good stuff.
First, lets get past the ones I don't think I ever experienced:
- Abdominal pressure - not that I can remember
- Persistent indigestion - nope
- Bowel issues - not really
- Bladder issues - no
- Clothes fitting tighter - nope
- Low back pain - nope
But there were a few that I think I might have:
- Feeling full quickly - I would sometimes feel full after eating a relatively small amount of food. Not just a little full, but that "I just ate way too much" feeling. But it wasn't consistent. I could still put away a bowl of pasta with the best of them when I felt like it. :)
- Persistent lack of energy - another one I wonder about. I was EXHAUSTED in the weeks right before my emergency surgery. But I was also working two jobs - usually more than 70 hours a week. This wasn't anything unusual, I'd been working two jobs for years, but two weeks prior to that first surgery, I actually quit my second job. Despite the free time, I was collapsing on my couch at about 8pm every night, unable to find any motivation to move again until I dragged myself to bed a couple hours later. Was it just adjusting to having free time again? Or the cancer? I wonder about this...
- Pelvic pain - of course I was feeling pain the night I went into the ER. But I'd had a very similar (though not as long lasting) pain the month before. At the time, I thought it was just bad cramps mixed with some constipation. (TMI, sorry!) But now I'm convinced it was the tumor on my ovary flaring up. Even more than that though, I've had that same pain (again, only lasting 4-6 hours each time) two other times during my life. Not any time recently, both were back in college, but it makes me wonder if it is all connected. Despite the absolute agony, I never went to the doctor any of those prior times. I'll be honest, this is one of my regrets. I wish that I had gone to the doctor about that pain in the past.
All in all, I had very few symptoms. Of course, my cancer was also caught very early so its hard to say if I would have developed more as it grew. But I definitely think we need to be paying better attention to our bodies. I was very cavalier about my health. I figured I was young, had few risk factors for developing any major disease, and I explained away some of the possible symptoms.
Please understand, I am not suggesting you rush off to the doctor for every little pain or tired day. But I have decided to take my health a lot more seriously these days. I no longer think its normal to be tired all the time. I no longer think persistent (or any acute) pain is "just getting older". And I'm certainly taking what I put into my body (nutritious food), products I use on my body (shampoo, lotions, etc), and what I surround my body with (chemicals, etc) a lot more seriously these days.
I encourage everyone to take charge of their health. Pay attention to what your body might be telling you. And if you truly feel that something is wrong, don't stop until your doctor can tell you what it is and what you can do to treat it.
Wednesday, September 5, 2012
The list could already be a hundred pages long - filled with sweet stories, hilarious adventures, and quiet moments of peace. Just off the top of my head I would include:
1. White-water rafting - both times! Oh the hilarity!
2. Every summer at Camp C - I owe a lot of my faith to that place.
3. Being a bridesmaid - I know some people cringe at the thought, but I've loved being a part of my best friends' special day!
4. Last Christmas in New Orleans - it was a great vacation during a stressful time.
5. Childhood vacations at my Grandparents' farm - that place was magic.
6. Becoming a Godmother - such an honor, I love my godson and goddaughter so much!
7. The time a stranger complimented my besties and I in Panera because we "brought such a great energy to the room". Nice to know that even a stranger can see that we have something special going on between us!
8. Getting my first dog - its a long story, but gosh I love this little mutt. (And the second one!)
9. Three graduations - High School, College, Masters - each a major turning point in my life.
10. Hearing the good news after my second surgery.
I'll definitely be adding to this list over time - I'll be so excited to look back at it over time and remember what a lucky (blessed) life I've had!
Monday, September 3, 2012
When I was first diagnosed, I naturally attempted using the internet to gather information. Unfortunately, most of what I read was absolutely terrifying for someone who had just been diagnosed. Especially since I didn't yet know what stage my cancer was (although I'd been led to believe it must be in the later stages) the information I came across was completely overwhelming.
Luckily, I happened to find the NOCC website and they have a "newly diagnosed" packet that they will send out to anyone. It was honestly the first time that I read anything that gave me hope. They have a booklet full of "survivor stories" that helped me breathe a little easier and believe that just maybe this wasn't a death sentence. I was so grateful.
Then I had my second surgery and recovered and went back to work. I tried to push cancer as far out of my life as possible. It wasn't until after they found the cyst that I went back to the NOCC website looking for some support. I found good information and also learned about the annual walk. I hesitated for a minute before sending in an email to volunteer.
I woke up bright and early to work at the registration tents. I did not really know what to expect but it ended up being a very profound experience for me. I was heartened to see so many people come and support bringing awareness to a disease that I really had barely known about 6 months prior. But I was also devestated and overwhelmed by some parts of the day.
I worked with two young women, no older than myself, who had lost their mom to ovarian cancer. I watched "teams" of people arrive with matching colorful shirts or signs that announced they were walking in honor or memory of a loved one. It was usually easy to tell if a group was an "honor" or "memory" team.
Teams walking in "honor" of someone often had themed shirts or posters that focused on the fight. They were sometimes humorous and always inspiring. There were some pretty awesome slogans made up for the team - I wish I had written some down!
The teams walking in "memory" broke my heart a thousand times over during the morning. Their shirts spoke about God needing more angels and usually featured pictures of the loved one. There were also stickers that participants could pick up and write their survivors names. I was shocked to watch time and again as people would stop and write the names of multiple loved ones they had lost.
There were a number of cool pieces of the event - including a survivor's picture and huge banners full of survivors' handprints from past walks. I didn't participate in most of them for a number of reasons that I'll blog about later, but mostly because I was busy volunteering. Once everyone left to begin the walk, I wandered through the booths and talked to a few people. Anytime I shared my experience, I was surprised by the thrilled look on people's faces when I told them I was Stage 1. Don't get me wrong, most people who hear my story are glad that it wasn't "too serious" but few really understand the significance. But the people at this event know exactly how miraculous it is to get diagnosed early. To not have to undergo chemo. To not have to have a hysterectomy. To have a good chance of long term survival. As hard as it was to witness everyone who hadn't been as "lucky" as me, it was amazing to be around people who "get it".
As I was about to leave the walk, I ran into someone I'd been hoping to meet...
I found Kathleen through a very old blog that she had started when she was first diagnosed. I was specifically looking for women like myself - young, diagnosed early, minimal treatment needed. Kathleen's blog not only struck a chord of familiarity, I learned she lived in the area. So, I tracked her down via email and then she stalked me back on Facebook. She has been an absolute lifesaver during the aftermath of surgeries, bloodtests, ultrasounds, and follow up appointments. Always willing to answer a million and two questions! I'm so grateful to have met her - both online and in real life!
Sunday, September 2, 2012
- September -
also known as
- Ovarian Cancer
Awareness Month -
I'm not going to lie, I'm reluctant to spend any more time thinking, talking, least of all writing about ovarian cancer than I absolutely have to right now. I hate the idea of any more of my time being taken up by cancer.
But it would be selfish not to recognize how important it is for other people to know more about this disease. Because unlike many other cancers, there is no routine screening or test done to attempt to diagnose it early. Many people find out by complete accident - much like I did. But unlike me, most people still find out when its already in its very advanced stages. And as I've noted before, the survival rates for later stage ovarian cancer are extrememly poor.
So, I'm going to blog a little bit more than I'd like to about ovarian cancer this month. About the signs, symptoms, and a little bit more about my own thoughts and experiences. Hopefully, getting the information out there will help women be more aware of how they can protect themselves.
Welcome to Ovarian Cancer Awareness Month!
Friday, August 24, 2012
The next day our big adventure was going on a "El" train tour. We boarded one of the trains and just took them all over town! We went down to the loop, took the trains out near my job, made sure the girls got a glimpse of the Lake, and took the subway too. The girls thought it was so cool and were such troopers!
The next day the girls' mom and brother plus our friend Sarah and her little one all came into the city. We braved public transportation again and made our way to "The Bean". This was especially exciting given that our Bean had never been to the Bean! The kids thought it was pretty cool. We then made a VERY long trek down to Chick-fil-a for lunch. Lisa took Bean home with her because I had big plans for Bug the next day!
Wednesday, August 22, 2012
(Click any picture to enlarge)
These dandelion (wishers!) pictures were so much fun! I love getting the girls to try out new things - they really are good sports.
Bug perfected her "princess smile" during this trip. She tends to get a little cheesy in her grins sometimes, so we worked on "gentle smiles...like a princess" and then she would usually give me some good real smiles too. I love that girl and she loves to pose!
Bean is definitely in a cheesy smile stage but she's just so cute, I don't want it to change! She has had the most expressionate face since she was born!
Fuzzy is just the happiest guy around - it was no problem getting him to smile for the camera...staying still is a lesson for another visit!
Monday, August 20, 2012
But there are definitely times when I catch myself during a particular experience or event and think, "this should have been on my bucket list... if I had one". You know the types of experiences - "firsts", especially special days, maybe even something that you thought would never actually happen. Those types of things that just make your life feel a little more complete?
One of the things I'm trying to "pursue" this year is really noticing those moments. I want to keep track of those moments somehow. I figure a blog is a good a place as any, right? But it needs a name!
So what would you call this list? Give me some ideas - throw them out there! Help a girl out!
Thursday, August 16, 2012
Tuesday, August 14, 2012
She reminded me that living me life worrying about and mentally preparing for reoccurrence is not at all what I want. She convinced me that this was exactly what I needed. And she was right, as usual.
So, off to Texas I went! I spent five days with my friend Kat and her family, taking an impromptu roadtrip all around southern Texas. After flying into San Antonio and spending the night at her house, we loaded the kiddos into the car and drove to South Padre Island. Despite the fact that we were only there for 24 hours, we sure packed a lot of excitement into the day!
After a quick late night stroll on the beach we went in search of dinner and a much needed margarita. We didn’t get any old margarita though, we got smoking margaritas complete with dry ice special effects! Can’t beat that right?
We also buried my godson in the sand – because what trip to the beach is complete without burying someone in the sand?
We packed up to leave the hotel and got randomly suckered into buying tickets to go dolphin watching! I was a little suspicious that we would end up just watching the water, but it was awesome! First, on the ride out to the dolphins, they let out a net that captures all kinds of sea life. They dump it all in a big tank on deck and have a little “show and tell” time. Puffer fish, catfish, lots of little crabs, seaweed, a starfish and even a tiny squid! They let us touch all the ones that were safe to touch and then dumped them all back in the gulf when we were done. Pretty neat!
Then we actually got out to the place where the dolphins swim! I expected we’d maybe see one or two, but we ended up seeing dozens! The sightings were brief (these aren’t Sea World performers) but definitely exciting and very cool to see up close.
After leaving South Padre, we drove down to the “Valley” where I lived in Junior High! We toured our old school and took pictures around our old spots. I also got to attend church and was shocked that people recognized me. I mentally calculated that I hadn’t been there in almost 20 years! (SO OLD!)
After dropping the kiddos off with family, Kat and I went to meet up with another good friend from our younger years. Joe was getting married that weekend and we were so excited to reunite and attend the wedding!
The next day we had to head back up to San Antonio and the day after that I flew back home. Such a fun trip filled with great friends and fond memories. So thankful to have such a great long-lasting friendships!
Sunday, August 12, 2012
Most recently, I have been spending almost every waking hour that I am not at work watching the Olympics - please tell me I'm not the only one! Thank goodness pretty much everything I'm really interested in is over. I am clearly too old to be staying up until almost midnight on a work day!
Gymnastics is easily my favorite and the women's gymnastics team really kept me on the edge of my seat all week. That little Gabby Douglas is just amazing and I was SO happy for Aly Raisman for pulling out the bronze and silver in her last two event finals.
In all of my googling and Internet searching about current and past Olympic gymnasts, I came across something I didn't expect. Remember Shannon Miller?
Wednesday, July 25, 2012
I get scary test results, everything stops.
Then Dr R tells me to keep going, that we will see how things are in another month, so I start living my life again.
During these "in between" times, it is actually pretty easy to keep my mind off the uncertainty of the future. My life is full and busy - especially in the summertime. So, the weeks speed by and before I know it, the time has come for another round of tests and the agonizing wait to find out what the results will mean.
Which is where we are again now.
(And I'm sorry I hadn't even updated the blog from last time!)
Today I had another ultrasound. This time with some positive results! The tech thinks that the cyst looks significantly smaller. Yay!! I'm not an doctor, but it sounds like a step in the right direction. I'll have my blood drawn on Saturday and find out the results in an appointment with Dr. R on Monday.
Meanwhile, I'm going to try to focus on all the good things going on right now - and post about them here! I never wanted this blog to just be about cancer. Especially since it is really such a relatively small piece of my life right now.
But as always, prayers are greatly appreciated. These tests and wait times are very stressful for me. I handle them a little less well each month it seems. I couldn't do it without the support I get from all of you!
Wednesday, June 27, 2012
Then last night, later than I thought my doctor's office worked, I got a call from a Physician's Assistant (not my regular one, because she is actually leaving the practice - boo!). She informed me that the results of both tests were back and wanted to give me a "heads up" before my appointment on Friday. My ultrasound results show that the cyst is still there and while it doesn't look like its getting any bigger, the pictures from yesterday's scan seem to indicate that it is wrapped around my ovary. More concerning is the results from my blood work though. If you recall, three months ago the number was 11 and a month ago it was 19 which is right in the middle of "normal" range. But yesterday it was 31, which is the highest it can be and still be considered "normal". While it is still technically normal, the fact that it is steadily increasing is concerning. From the tone in the PA's voice when she said, "we will be talking about the next steps on Friday", I knew things were not looking good. She promised to page Dr. R in the morning and get some clarification for me.
I called my mom and she has decided to fly here tomorrow so that she can be here for the appointment on Friday. We might be over-reacting a little bit, but it just seemed like the right thing to do at the time.
First thing this morning, I got a phone call from the PA again. (Have I mentioned recently how awesome and wonderful and compassionate Dr. R's team always is? They are.) She reassured me that they are trying to do whatever they can to avoid surgery again. So, they sent my ultrasounds to another department to see if draining the cyst is a possibility. Unfortunately, as I was writing this, she called to say that draining it won't be a possibility because it is too small. (Which should sound positive, but I fear just means that we can't get any definite answers.) I have a CT scheduled for tomorrow (it was already scheduled and it may give us a little more information, but probably not too much) and then will be seeing Dr. R on Friday to talk about where to go from here. I'm pretty calm right now, just hoping and praying for answers without surgery. Which is what I am asking you to pray for too.
Specific Prayer Requests:
1. Please pray for some answers. I am really struggling with this wait and see game but certainly don't like the idea of a THIRD major surgery.
2. Please pray that this is not cancerous and that surgery can be avoided completely.
3. Please pray for Dr. R and the rest of the medical team - that they continue to make wise choices.
4. Please thank God for putting me in such capable and compassionate hands. I really can not say enough good things about the care that I have been in with these doctors, PAs, nurses, etc.
Tuesday, May 29, 2012
The doctors' appointments last week went pretty well and things seem to be holding steady right now. The ultrasound doctor (different one than last time) as much more positive from the get-go, which meant that the 6 hour wait between appointments was much less stressful than anticipated. He said that the cyst is looking much more like a peritoneal or ovarian cyst. This was great news, because last time they basically couldn't get a good read on it at all. It also looked marginally smaller - not a lot, but a little is better than nothing!
A friend came with me to this appointment - which was a huge help since I also got A LOT of information! I will give myself full credit for getting this info, I came with a list of 24 typed up questions. I handed to the nurse when I was first taken back to an exam room and by the time Avery (Dr. R's PA) came in, she had already written answers to about 3/4 of them. She explained as much as she could, then left the rest to Dr. R.
Dr. R was much more positive during this appointment as well. In many ways, nothing much has really changed - the cyst is still there, we don't really know what it is, there is still a chance at surgery - but he was just more reassuring. (That's the Dr. R that I know and love!)
We are going to try a few things in hopes that it will either a) help the cyst go away or b) at least give us a better idea of what it is. I will go back in two months for my regular CT scan and blood test, as well as another ultrasound. Until then, I'm holding steady and feeling positive.
Thanks again for everyone who follows along, sends prayers and positive thoughts, and supports me during these trying times. I know I've said it a lot - but I wouldn't be handling this half as well without each and every one of you!
I also have some way more fun blog posts in store - excited to focus on the more important things in life?!
Thursday, May 17, 2012
Tomorrow is the big day - or at least the next "big day" on the calendar. I have my follow up ultrasound appointment at 9am, then will wait around for the doctors all to write, send and read the reports. At 2:30pm I have my appointment with Dr. R to discuss all the findings and options.
I do have a friend coming with me this time - so grateful for each of the ways people have stepped up in my life, I am truly a very lucky girl. She has a copy of a list of 20+ questions that I want to make sure I get answers to before tomorrow's appointment is over. (At which point I'll probably have at least twenty new questions!) My mom will also be on the phone so that she can hear the details first hand.
I already have phone calls and tentative appointments set up with 3 different doctors for second opinions. Once I know for sure that I need one, I'll make my final decision about which one I'll actually choose.
Thank you all for all your love - I just can't say that enough.
Specific Prayers for tomorrow:
1. Please pray that the cyst is gone - COMPLETELY GONE.
2. Please pray that my CA-125 levels are still low.
3. Please pray for discretion and wisdom in my decision making.
Friday, May 4, 2012
The gist of it is that Dr. R is recommending another surgery and a hysterectomy.
It took some time, talking to various friends and family, and then some follow up calls to Dr. R's office before I felt like I understood exactly what and why this was happening. The cyst is being referred to as a "peritoneal cyst" and they aren't particularly uncommon - especially in people who have had major abdominal surgery. Initially when Dr. R walked into my room he talked about waiting 6 weeks and re-evaluating at that time. But as we continued talking, and I continued asking questions, the conversation turned to treatment options. There are lots of options to consider:
- Leaving the cyst inside me is risky because it could contain cancerous cells.
- Three surgeries in a year is rough on my body.
- Removing my uterus and ovary reduces the places cancer can hide and multiply.
- Menopause at 32 is no picnic and has a myriad of negative side effects.
- Removing my uterus and ovary doesn't guarantee the cancer won't come back in other places.
Basically, what I was told was this:
- It is very rare for 32 year olds to get ovarian cancer. (Average age is 63.)
- When someone as young as me does have ovarian cancer, it isn't the type I have.
- Because my cancer has already proved to be "abnormal", Dr. R wants to be more aggressive and give me a better "outcome". (Dr talk for "live longer".)
But the wonderful thing about Dr. R is that he understands that he isn't the only one making decisions here. He very clearly said, "this is your choice". I appreciate that he realizes that I have to be part of this decision making process. And part of the way I will make that decision is probably going to be another second opinion. Its not that I don't trust Dr. R, but once again I feel the need to have more than one "expert opinion" before I can make the "final decision".
I feel very strongly about this.
This is my life we are talking about.
And my life is about more than just how many years I get to be here on Earth.
So, here I am asking for your SPECIFIC PRAYERS again.
1. Please pray that the cyst is gone - COMPLETELY GONE - when I go in for my next ultrasound in two weeks.
2. Please pray that my CA-125 levels are still low when I have my next blood draw in about a week.
3. Please pray that I will find another doctor that I feel I can trust to give me a second opinion - I'll be looking/calling for appointments this week so that they are ready when these test results come back in a couple weeks.
4. Please pray for discretion and wisdom in my decision making.
Thank you all so much - I know I am asking for a lot here, but nothing is too big for God right? I might as well aim high! :)
Friday, April 13, 2012
Tearing off those links will hopefully inspire me to keep going this time! We will see!