Monday, November 28, 2011

5 Things I Wish I Knew about CT Scans

So, I had my CT/CAT Scan today. Everything went fine and I'll get the results on Friday when I meet with my new doctor - Dr. R - again.

But I learned a few new things that I figure might be helpful for anyone else out there who has never had a CT Scan. I had one two weeks ago when I went to the ER, but I was so out of it on pain and morphine that I don't honestly remember much. So, this list is also to help me remember what to prepare for next time!

1. Arrive early - but bring a book.

I definitely wouldn't want to worry about rushing through the drinking barium, so I recommend getting there a little early. (Which if you are me, means you will get there right on time!) But bring a book, because you have to wait at least 45-60 minutes between the time you drink the contrast and when they actually do the scan.

2. Wear leggings!

Or some other kind of pants without buttons or any other metal. This will save you from having to go bottomless when they make you change into a hospital gown. I actually did this today, but there was a nice woman who obviously was experienced in getting CTs who expressed surprise that they'd never told her that she'd be able to keep them on!

3. Bring a friend

It seems like a boring appointment to drag someone else along - just a lot of sitting and waiting for a short procedure. But at least in the beginning, its nice to have someone to make the waiting go by faster. Especially if you are still feeling like this whole process is surreal - I know I still do. So, thanks Laurie for volunteering - I really appreciate it!

4. Bring juice

I had my choice of Barium flavors - apple, banana, vanilla, and at least two others. But there is some kind of pre-contrast stuff that they usually mix with water and make you drink first. It is AWFUL - I made Laurie smell it just so that she could confirm its disgustingness. The nurse told me that they will mix it with apple or grape juice if I bring some next time. Noted!

5. Be prepared for the heat

Once they get you on the table in the scanning room, they hook you into an IV. Then after a few initial scans, they push another kind of contrast agent. As soon as they do this, your whole body will flush very warm. Warning - it will absolutely feel like you just peed your pants! I don't remember that part at all during my emergency CT - but this time I was quite surprised! So, be prepared!

Overall, a CT is really a non-event - which is good because I see a lot of them in my future! Thanks again everyone for your thoughts and prayers today. I will update again after my doctor appointment this Friday!

Sunday, November 27, 2011

So Thankful...

After a weekend of celebrating all the things we are thankful for, I wanted to take a few minutes to say what I am thankful for these days...

I am firstly thankful to God, because He is the one who has provided me with all the blessings in my life. The most important blessing - forgiveness and salvation through his Son - but also all the little blessings that have been made so evident to me these last few weeks.

I am thankful for Black Friday shopping! Not because I got great deals and am almost done with Christmas shopping already - but because its a tradition that two weeks ago I thought I wouldn't be able to participate in this year! But I was feeling pretty good and so the tradition has not been broken! Thankful to Melanie who braved the crowds with me again this year!

I am thankful for good medical care. Not just from my current doctor, but that I live in an area where hospitals (amazing ones!) are plentiful. I don't have to travel many miles from home to seek out quality care - I could practically walk to more than one major research hospital. Which also means that I don't have to worry about leaving my support system either. So very thankful.

I am thankful for my family - and not just the one God put me in when I was born. My Mom, Dad and Emma, brother and sister have all been great - plus I know that my cousins, second cousins, etc have been checking in on a regular basis. But also for the people that have "adopted" me as family over the last few years. Mom and I had Thanksgiving at my best friend's parents' home last week. And I've already had offers to attend doctor's appointments with me for moral support. It is so comforting (especially for my mom) that I have people who will be looking out for me. Thank you pseudo-family!

I am thankful for my cozy apartment and my two crazy dogs. I'm never alone and they are keeping me company when the visitors leave. I'm also thankful for a good friend who came by to clean for me! So nice to relax and recover in a clean bedroom with an organized closet - plus I got to snuggle her baby while she cleaned. A girl could get used to that! But mostly I am thankful for friends who have stepped up in their own ways - cooking, cleaning, visiting, and just bringing groceries. And all the kids who have colored me pictures and wrote me Get Well notes - thank you Isabel, Eli, Luca, Alexa, Ben and Lillie!

I am thankful for the Internet. I dare anyone to say technology is making us more isolated - just this week I have gotten a visit from a childhood best friend who I haven't seen in almost 20 years! And dinner ordered for me by a high school show choir-mate that I haven't seen in at least 10 years. All because Facebook has kept us interconnected and made it simple to get the word out that help was needed. I am also thankful for Twitter, and the fact that almost anytime of day I can find someone online to keep me company. Not to mention all the people that have been able to send good thoughts and prayers because word can now spread so fast! Thank goodness for not having to rely on "snail mail"!

I am thankful my job. My boss is so supportive and my co-workers have stepped up to call and visit. I'm lucky it provides me time off to heal and with insurance to cover this situation. I'm also thankful that I really enjoy my work and hope to be back within the next week. I'll be very thankful for the distraction and to feel productive again!

I am thankful for laughter. Since Jill cracked the first joke around my hospital bed, I knew that laughter would be one of the main ways I coped with this new "adventure". Which is also why I changed my blog title to something (hopefully) funny. While this whole situation is serious and has undoubtedly changed my life, I hope it won't change that much about who I am. And I love to laugh. Plus, its true - never before have I shared this much about my internal organs with so many people! So thankful for everyone who has laughed with me recently - even through our tears.

I am thankful for everyone who has contacted me over the last few weeks to share positive thoughts, good advice, helpful suggestions, and reassurance that they are praying for me. Many have said, "I don't know what to say", but the fact that you reached out to say anything at all is plenty. Thank you!

With so much to be thankful for, it feels somewhat strange to ask for anything. But because I know who my friends and family are - I know you won't mind a few more requests for prayers.

Specific Prayer Requests for 11/27/11:

1. Tomorrow (Monday 11/28/11) is my CT (CAT) Scan. While I won't get any results from it until Friday, please pray that it goes well and that they get a clear picture of what is going on inside of me.

2. Pray that I am feeling able to return to work sometime this week. I feel pretty good and am hoping I can get cleared. I know I'll need plenty of time off during the next year, so I hope to work now while I feel strong.

3. Pray for continued healing - my incision seems to be doing just fine and some more feeling is coming back around where they opened me up. But that also means painful zingers and strange tingly feelings that come out of nowhere! Please pray that I continue to heal well and am able to do more things independently - it stinks not to be able to reach things when you've dropped them!

Thank you everyone - I am so thankful for each and every one of you!

Friday, November 18, 2011

Calm Down

Those were to words that my new doctor said about 52 times during our appointment today.

"Calm down"

He wasn't being patronizing, he was being unbelievably reassuring.

He wants to wait.

He wants to see all the slides, labs and tissue samples from my first hospital - so that the specialized Gyn Pathologist at the new hospital can look at them all again. He wants to send me for a full CAT scan.

And he wants us all to calm down.

He is not worried that waiting a few weeks is going to make any difference in my health or outcomes. He told us that the chance that the ruptured cyst/tumor/whatever from my first surgery is the least of our concerns right now. He wants me relax and heal before moving forward with any treatment.

He was very firm that a second surgery is almost a given. He explained that it is necessary to "stage" the cancer. (Determine if it is Stage 1-4.) But while the other hospital lumped a hysterectomy into the staging process, Dr. R did not. He said that during the second surgery he will take samples from a lot of other areas in my abdomen and examine my uterus and remaining ovary. Then after doing all of those things, he will decide if the hysterectomy is necessary.

It will all be part of the same surgery - Its a little nerve wrecking to know that I'll have to fall asleep not knowing if I'll wake up with them or not. But I felt much more reassured that he would only take them out if it was completely necessary.

I have another appointment in exactly 2 weeks. In the next two weeks he will go through all the old information and the new CAT scan. Then we will talk about treatment. He says that a second surgery probably won't occur until after Christmas.

While waiting feels a little like prolonging the agony - I'm actually really relieved. I'm relieved to know that I get to spend some time healing. I am relieved to know that I get to have a normal Thanksgiving (and Black Friday with Melanie!) and Christmas. I'm relieved that I have time to think and get used to all of what is in store for me.

So, all of you can calm down too okay? :) But don't stop all the prayers, good thoughts, and well wishes - those are still needed! I'm so thankful for all the visitors and food and support! I'm trying to get through all the emails and Facebook messages that have been sent the last few days - you'll all hopefully hear from me soon! Plus, I'll keep updating the blog with any and all news.

Love,
Rachel

Day of Big Decisions

I believe that today will be a day of big decisions.


I have an appointment with the medical director of Gynecological Oncology at one of Chicago's best hospitals. Yesterday, I called an old friend who is a OB/GYN in the area and practices at some of the major hospitals. She immediately named this doctor and he was also one of the referrals I had gotten from the GO at the community hospital.

We called his office and asked when the next available appointment would be - initially we were told he didn't have any openings until after Thanksgiving. But after a phone call from the doctor who did my first surgery, I had an appointment for today! So thankful that she was willing to advocate on my behalf.

I'm nervous but excited to talk to the doctor today. I'm not especially hopeful that he will have any drastically new information or treatment ideas. I will be glad to have heard from a second doctor though and to finally feel like I am able to make an educated decision about all my options.

*****

I was discharged yesterday from the hospital! It was so nice to be home last night! My dogs were crazy with excitement, of course. I had a few visitors - all of whom brought food of course! It was so appreciated - delicious pasta, a very yummy chocolate cake, and various goodies to stock my fridge. :)

If you'd like to arrange a day to bring a meal (and just come visit!) over the next few weeks, please contact Melanie - she is being so wonderful and arranging a calendar to make sure we are well fed during this crazy time. Its nice to not have to worry about food with everything else going on. Thank you Mel!

*****

Specific Prayer Requests 11/18/11:

1. Prayer of thanks for quick healing and getting discharged yesterday!
2. Peace no matter what I hear today during my 2nd opinion appointment.
3. Wisdom in making decisions today.

Thursday, November 17, 2011

Good News Came Early This Morning!

The more I talk to doctors, the more good news I get! (Its amazing what starts seeming like "good news" after you are diagnosed with cancer.)

This morning I met with the Medical Oncologist (MO) and my surgeon from Monday. The MO said that generally a hysterectomy followed by chemotherapy is the "standard". However, he also said that he believes it would be alright to do chemo first and then do a second surgery to see if there was any remaining cancer.

There are risks involved with waiting obviously - the quicker we get rid of all the cancer, the higher the survival rate. Taking out all those organs would be the quickest way to get out most of the cancer. Plus there is a very high chance that even with chemo first, I'd still have to do a hysterectomy at some point.

But at least I have options. I get to make the choice.

No matter what, its important that I make decisions about possible egg harvesting now. Chemo would likely kill off any healthy eggs and a hysterectomy obviously means that I would not be able to carry a baby. But if I decide to have eggs frozen it would give me options for using a surrogate later on if that is what I wanted. But I need to decide now if I want them harvested and frozen.

Again, these are choices I didn't know I had two days ago. I am very relieved to have choices!

I don't fault my doctor on Tuesday for wanting to get me back into the operating room immediately. At that point I was running a fever, my blood counts were completely out of whack, and she was very concerned that I might be having complications from the ruptured tumor/ovary. She was more worried about me becoming septic than giving me lots of choices.

But I am very thankful that I have choices today.

More good news - while Chemo will last about 6 months, the MO said that it is usually standard to only receive one round every 3 weeks. Which means that I will likely be able to go back to work! I will have to take a few days off around each new round of chemo so that I can rest and see if there are any side effects. But he said that most people are able to keep working - I'm so grateful that I will be able to work! I love my job and am sure I will be grateful for the distraction. Plus, I have good friends at work that I would miss!

I'm still making decisions about who/where I will go for a second opinion. I'm calling an old friend (who is a OB/GYN) and getting some advice about who will be the best. My doctor here is willing to make phone calls on my behalf to try to speed up the time for getting an appointment for the second opinion. I just need to pick a doctor/hospital.

My fever has been gone for over 36 hours, my blood counts have stabilized, and they are talking about discharging me today! I'm still pretty uncomfortable, but can walk around slowly and am looking forward to being at home soon.

******

Specific Prayer requests for 11/17/11:
1. Direction in choosing a doctor for 2nd Opinion
2. Wisdom for the Doctor who will be making the second opinion.
3. Discharge today!

Wednesday, November 16, 2011

What I Know, for Now

Okay, I know there are so many questions and right now not as many answers as I'd like there to be - but here goes.

The short version of the back story is this:

*****
Sunday 11/13

I was feeling fine all day until about 3pm when I started having a dull crampy pain in my stomach. I just figured it was PMS and intermittently laid on my couch with a heating pad and cleaned my house. Around 7pm, the pains were getting worse but still not anything that wasn't pretty normal for me. I decided to take a shower, with the intent to just hang out on my couch for the rest of the night. By the time I got out of the shower and managed to put on clothes, the pains were much worse and I began to worry. At around 9pm I started making some phone calls to see if anyone could take me to the ER. I still kinda felt like it might be nothing, and that I was going to feel really bad for dragging someone out of there house that late at night. I finally got in touch with Melanie (BFF) who came to get me and took me to the nearest Emergency Room.

Once in the ER, they thought it might be appendicitis so I went for a CAT scan. That revealed that it wasn't appendicitis but that their was fluid (probably blood) in my abdomen. They said I would need an ultrasound and probably laproscopic surgery. But I was stable enough to wait until morning, so they sent Melanie home.

Not long after she left they gave me something different to help alleviate my pain. It was magic - no more pain! Unfortunately, my blood pressure also plummeted - to about 80/40. After putting in multiple IVs and stabilizing my BP, they put a rush in on the ultrasound tech and next thing I knew I was being wheeled around the hospital again. The ultrasound confirmed that I had a lot of fluid in my belly - and likely a cyst on my ovary. They decided it couldn't wait until morning and began the process of calling in the surgeon.

After a flurry of phone calls to Melanie and my mom - plus a frantic and uninformative text to a few more important people - I was wheeled into surgery. I was told it would not be laproscopic because they really wanted to try to save my ovary. Then I was out.

*****
Monday 11/14

When I woke up I was told that they had taken out my left ovary and over a liter of blood and tissue. The doctor said she tried to save the ovary but it just kept falling apart in her hands. I don't remember much about that day because I had an unlimited morphine drip, which I used liberally! Alida was there to stay with me when I got out recovery. Melanie, her mom, and some co-workers showed up to check on me. Lots of texts and well wishes came flooding my way. I have never felt more supported.

*****
Tuesday 11/15

I woke up on Tuesday feeling much less sore - but I was running a fever and had to have a blood transfusion. (Which took over 10 hours! Who knew?) I had more visitors to keep me company and was feeling on my way to recovery. I was dreading the 4-6 weeks that the docs were telling me that I would need to be fully healed.

Then the bombshell - my doc came in and told me there were cancerous cells in the samples they'd taken out of me. She recommended that I allow another doctor - the gynocological onocologish (GO) - do a full hysterectomy. Immediately.

I did what any mature woman in her early 30's would do - I called my Mommy. And she did what mommies do - she got on a plane.

I was surrounded by some of my favorite women that night. Melanie, Alida, Jill and Kass (and Lisa via phone), I can't tell you how much you all mean to me. I love you all so so so very much.

*****
Wednesday 11/16

The last 24 hours have been a whirlwind of questions, emotions, answers, more questions and even more questions. My mom and dad are both in town. I've made lots of phone calls to tell those closest to me. Please don't be offended if I didn't call personally - after the first 3 times of repeating all of this, I realized that I couldn't keep having the same conversation over and over. Hence, this blog.

Right now I am seeking a second opinion. Not really about whether or not I have cancer - but about treatment options. My brain knows that a hysterectomy is probably the way to go - but my heart hasn't caught up quite yet. I'm trying to walk the very fine line of getting as much information as possible, to satisfy my heart - while my brain reminds me that I need to do things quickly and move forward with the healing process. I'm hoping to make a decision about who/where to get my second opinion from tomorrow. Thank God I live in a place with plenty of awesome hospitals!

*****

Where to go from here?

I want everyone to know - its not a secret, please spread the word. I welcome all your support and prayers. Please don't be afraid to pick up the phone andcall. And visit - I love visitors. :) Don't worry about overwhelming me - I'd rather be overwhelmed than wishing you would call. I'll tell you if its not a good time to talk or visit. But I am pretty sure that everyone who wants to do either will have plenty of chances in the next few weeks and months.

Melanie (and I think Lisa?) is working on a list or calendar of people to bring food and other things for the next few weeks. Her email will be on the sidebar if you'd like to help in that way. No pressure. :)

More importantly, I value your good thoughts, well wishes and prayers. I'll keep this space updated with specific prayer requests as the days go by and I know I have an awesome group out there that will be sending up plenty of them! Thank all so much - I love each and every one of you.


Specific Prayer Requests for 11/16/11:


1. Continued physical healing from Monday's surgery.
2. Speedy turn around time for a second opinion.
3. Wisdom in making the right decision regarding treatment.
4. Peace about whatever that decision may be.