2/25/10 Update

Gynecologist's office called this morning. My PAP smear was normal. I should be happy, but instead I am just worried he wasn't able to get a good enough sample, due to all the scar tissue. I guess I will just play it by ear for now.

Plastic surgeon's appointment was today. 25 ml of fluid was drained from the right side of my back. Not too bad! She also added 30 ml to my left expander. This side is playing catch up, so the right side didn't get any. I go back next Thursday. Everything is going well and she said we don't have much further to go!

Gynecologist appointment

Today I went in for my pap smear. Hard to believe it has already been 6 months. My doctor told me he wasn't able to get the brush into my cervix, due to the scar tissue. That is not good. If he can't get in there, we can't monitor if the cancer cells came back or not. He stressed to me, more than once this visit, that this is serious and nothing to mess around with. I told him that I understand that, but I want to keep the hysterectomy as a last resort. He understood since it is a major surgery and every surgery has its risks and complications, as I am well aware. He said I could go into the OR, have a D&C (Dilation and curettage is done by passing a small instrument called a curette through the vagina into the uterus and scraping the endometrium.) and he can try to dilate my cervix. The problem is there is no guarantee it will stay that way. If that is the case I really need to have a hysterectomy. My doctor will call me after he gets the results of my pap back and we will go from there.

I thought they were going to have to bury me!

Yesterday morning I was woke up with the most HORRIBLE cramps I have ever had in my life. I took Motrin, plus my twice my prescribed dosage of prescription pain med and it didn't touch it. For about 4 hours I was crying and fidgeting trying to get the pain to stop. I could feel my uterus was enlarge and it was painful to palpate. I was getting ready to go to the ER when it eventually subsided.

Fast forward to around 5 o'clock last evening. BEWARE: TMI AHEAD......

I was laying on the couch and my cramps were starting to get bad again. Then all of the sudden I felt something pop and all of this blood FLOODED out. I mean a TON! In the time it took me to RUN from the couch to the bathroom my underwear were completely saturated (front and back), my sweatpants were too, plus there was a pool of blood in my underwear. My hands, legs, entire butt, toilet seat, bathroom floor were all covered, plus this deep purplish blood was pouring out of me like a faucet. It wouldn't stop. I sat on the toilet for quite a while and then decided I needed to put a pad on and call my gyne. Within 10 minutes a heavy pad was saturated and I was a mess all over again. Back to the toilet I went. I continued to bleed super heavy all night. I had a super plus tampon in, plus the pads and they would both fill within 30 minutes.

My doctor told me I could go to the ER if I wanted to get checked, but since I hadn't had a period in almost a year it was going to be heavy, so I decided to stay home and just keep an eye on it.

Here's what I think happened: When I had my last appointment with my gyne he told me my cervix had a lot of scar tissue from the cone biopsy and it was basically sealed shut. Well I started having cramps the last couple months that were progressively getting worse. I think my lining was shedding and not able to come out, until finally it got to be so much it broke through the scar tissue. That is my official diagnosis. LOL!

I wish I would've taken a picture, because seriously you have no idea how much blood there was. It looked like a murder scene. I have never seen so much blood in my life. I am still bleeding heavily, but not like yesterday, thankfully!

I am scheduled to see my gynecologist in less than 2 weeks.

3 days till surgery!

Tuesday is coming quickly and I'm feeling very overwhelmed. I've even thought of canceling it altogether. I hate that my options are this or nothing. I shouldn't have to deal with this at all. No one should have to deal with this. I HATE cancer!

My gynecologist called yesterday to tell me that my ultrasound looked okay. My uterus was a bit enlarged, but that is it. Not sure what that means. I didn't take the time to ask.

My bone scan went well. I'm sure my doctor will call me if there is a problem, but I don't expect that there will be. Right now surgery is the only thing on my mind.

On a happy note....my sister, Jess had her baby this morning at 10:02. She is 8 lbs. 3.5 oz. and 20" long. Welcome to the family Scarlet! I can't wait to hold you. We love you already!

Green means GO!

I went to see my oncologist and he gave me the green light for surgery! My EKG just showed I had an irregular rhythm, my chest x-ray and my muga heart scan were both good. I updated him on everything that has been going on since I had last seen him (all my gyne issues) and he insisted on scheduling me for a bone scan, due to the back pain I have been having. I go Friday.

I also had my pelvic ultrasound this morning, so I hope to hear from my doctor this week. All the tech said was my endometrium was thick. That could be indicative of my period getting ready to start or it could be from the Tamoxifen. There is no real way for them to know the cause. I'll just wait and see what my doctor has to say.

Surgery in 7 days!

Today I went to see my gynecologist to see if he could tell me why I've been feeling like such crap. He said my uterus looked good, but my cervix is almost fused shut with scar tissue (from the cone biopsy I had in October). The uterine pain could be my period trying to start back up (Chemo has it MIA) and it can't get out or I could have an infection. Not really sure. He is having me come in next Tuesday for an ultrasound and then he wants to recheck me in 2 weeks. He did mention (again) that the gynecological oncologist recommends that I have my uterus and ovaries out. I then replied (again) that I do not want that! lol So for now I will take my 2 antibiotics and wait to see what the ultrasound shows.

LBBC Conference and My update

This past weekend Friday 11/13/09 - Sunday 11/15/09 I took a road trip to Philadelphia to meet some of my young breast cancer survivor friends at the Living Beyond Breast Cancer conference. I met these ladies online on the YSC website and had never met any of them in person, but yet when I met them I felt like we were family.

Friday afternoon I went to see the Liberty Bell with Nicole and Jamie.






























My roomie, Barb had flown in from Canada and we ended up being a perfect fit.













She was CRAZY FUN!! Of course our room ended up being the party room Friday night.













Rosie, Me, and Merc













Group shot of the Party crew.
Kim, Merc, Beth, Melinda, Me, Barb, and Nicole. Others stopped in to hang out too, but I didn't get a group shot then. :(













Saturday was the conference. Here is a pic of my treatment group girls who were at the conference. We are the Chemical Crusaders and we supported each other all through chemo, so it was wonderful to finally get to meet in person.
Barb, Me, and Carrie.













Some of my YSC girls who were at the conference.
Kelly, Merc, Ingrid, Barb, Beth, and Darcie.














Back row: Michelle, Nicole, Melinda, Rosie, Barb, Beth Front row: Carrie, Kelly, Kim, Merc, Me, and Darcie.













Saturday night we went to dinner at a restaurant called Vietnam. Some of the YSC girls who didn't come for the conference met up with us there.

Sitting: Beth, Kim, Kelly, Nancy, Barb Standing: Merc, Steph, and Catherine.













Carrie, Nicole, Jamie, Christi, Carolyn, Michelle, Rosie, Melinda, and Jen













Carolyn and I













After dinner we all split up. A group of us hung out in the lounge part of the hotel bar and just chilled.
Barb, Kim, Merc, Kelly, and I.













Sunday Barb and I just chilled in our room for most of the morning and then went to lunch before I headed home. This weekend was definitely one I will remember forever. These women will be my friends for life.

Now that I've told you all the good stuff, I will move on to the bad news. Friday night my gynecologist called me. He was finally able to speak to the gynecological oncologist. He is recommending that I get my uterus and ovaries all taken out. :( I really do not want this, so I told my doctor that I want to wait until my next pap smear (February) to see if it comes back abnormal or not. He didn't think this was the best idea, but it is my choice, so that is what we will do. I realize I am taking a risk, but I feel this is a decision I need more time to think over. After all, I have lost so much already and once I have the surgery there is no going back.

Super quick update....

My gynecologist and the gynecological oncologist have been playing phone tag. My chart is still on my doctor's desk, so they didn't forget about me.

I also want to share the kids fall school pictures. We just got them back yesterday and I think they turned out pretty good.

Gavin Tait
4th Grade


















Camille Alyse
2nd Grade

Pre-op appointment

My testing was suppose to all be done at the pre-op center, but they were running behind. Rather than have me wait, the lady sent me out to go to each individual department to have my testing done. I started on zero floor, then went to the first floor for registration and the lab, for blood work and a urinalysis. From there, I went to the third floor for my chest x-ray, and finished up with an EKG on the fifth floor. As you can see I pretty much took a tour of the entire place and got my exercise at the same time!

As I was sitting in the radiology department waiting for them to make sure my x-ray films were good quality, a panicked feeling came over me. I started worrying that they are going to find something. I know this stems from my paranoia about those stupid lung nodules and I hate it. I hate that cancer has made me fearful for my life. Let's just pray all my testing comes back normal.

I haven't heard back from my gynecologist yet, so I will have to call the office tomorrow to see what the recommendation is.

Gynecologist post-op visit

This morning I went to see my gynecologist for my post-op appointment. He reiterated that the pathology report said severe dysplasia/carcinoma in situ. I asked him if the cone biopsy and fractional D&C usually took care of it and he said that most doctors would probably say that since I am done having children, the uterus should just get yanked. UGH!!

I am high risk for cervical cancer, so he is going to call a gynecological oncologist in Pittsburgh to see what he recommends and then call me. I really do not want to have a hysterectomy. Just the thoughts of it make me nervous. I'm not sure I will do it, even if this doctor recommends it.

I should know this week.

Test results

The last couple days have been a roller coaster, let me take you on my ride....

Yesterday I found out (in an unofficial way) my cervical cone biopsy results. They came back squamous cell carcinoma in situ. Knowing that carcinoma in situ means "cancer in place" I freaked, but I hadn't heard from my gynecologist yet, so I was trying to be optimistic.

My gynecologist called me right before I left this morning and told me the path report came back showing severe dysplasia, but he got clear margins, so I'm good to go. I see him in 4 weeks. I didn't say anything to him about what I already knew, since I was told unofficially.

Then I went to see my surgeon. EGD and colonoscopy were both normal. H. pylori biopsy was negative. That was all good, THANK GOD!

We scheduled to have my port removed next Wednesday. My oncologist would like it to stay in for a while, but I told him it is in my way of reconstruction, so it is coming out. If I need one, I can always have a new one put in. I won! lol

I then told my surgeon about my cone biopsy results. I told him my oncologist's office said "Carcinoma in situ" meaning cancer in place (Stage 0) and my gynecolgist called it severe dysplasia. I asked if they were the same. He said No, they are close, but there is a difference. The treatment may not change, but there is a difference that my gyne needs to clarify and I will need to be watched.

I left there and stopped over to my oncologist's office. I got a copy of my path report and it says "severe dysplasia/squamous cell carcinoma in situ (CIN 3)" Some of the ladies there think I should go to Pittsburgh for a second opinion from a gynecologist oncologist. In their mind, they are thinking cancer. I did not talk to my oncologist about this.

So at that point I was really confused.

I then decided I would turn to a friend from my breast cancer board (YSC) who is an OB/GYN. I told her what was going on and she explained it to me like this....

"CIS (carcinoma in situ) and CIN III (severe dysplasia) are barely distinguishable. CIS, while it does have a similar name to DCIS (stage 0 breast cancer), is not considered cancer. It's very confusing since the word carcinoma is in the name. It's a fine line and maybe it's just semantics, but it is where the line is drawn in the world of cervical cancer. CIS and CIN III are both part of high grade SIL (squamous intraepithelial lesion) and are both severe dysplasia. Nothing more (fortunately!). To be considered cervical cancer, there must be documented invasion. No invasion=no cervical cancer. In the gyne world, this is a clear distinction."

So, I can finally breathe easy. I DO NOT have cervical cancer!!!!!

Stage 0 is not considered to be part of the cervical cancer staging system because there are abnormal cells only in the surface layer of the cervix. The cells have not spread away from where they started or begun to grow into the deeper tissues of the cervix. So it is not an invasive cancer. But some doctors still call it stage 0.

I will just need to follow up with my gyne for regular exams to make sure the dysplasia does not return.

Cone biopsy and D&C

This morning I had my cone biopsy and fractional D&C done. It went well and I was home before noon. I've spent most of the day lounging around, dozing on and off, while watching tv, because I am feeling pretty crampy. Hopefully tomorrow is better.

My doctor's orders are to decrease activity for 2 weeks and make an appointment to see him in 4 weeks. Oh and I guess there are stitches in my cervix, that sometimes come out. If that happens, the bleeding will get worse, and I am to call.

We should have biopsy results this week.

Severe Dysplasia

My gynecologist just called to tell me my biopsy came back showing I have severe dysplasia. These are precancerous cells on the surface of the cervix, the lowest part of the uterus. These changes in cervical tissue are classified as mild, moderate, or severe. Left untreated, dysplasia sometimes progresses to an early form of cancer known as cervical carcinoma in situ, and eventually to invasive cervical cancer. Moderate and severe dysplasia are less likely to self-resolve and have a higher rate of progression to cancer. The greater the abnormality, the higher the risk for developing cervical cancer, so I will need to go in for a cone biopsy.

A cone biopsy is an extensive form of a cervical biopsy. It is called a cone biopsy because a cone-shaped wedge of tissue is removed from the cervix and examined under a microscope. A cone biopsy removes abnormal tissue that is high in the cervical canal. A small amount of normal tissue around the cone-shaped wedge of abnormal tissue is also removed so that a margin free of abnormal cells is left in the cervix. This is done as an outpatient surgery. I have to call to get it scheduled, but will update when I have that information.

9/15/09

Today I went in for my repeat cervical biopsy, that was scheduled due to my pap smear showing a high grade lesion. When I got there my doctor starts reading over my results and I come to find out I have atypical endometrial cells as well, so he did two biopsies (cervical and endometrial). For those of you who have not had these procedures, the endometrial one is not pleasant at all!

While I was there, he was asking questions about whether or not I was done having kids, so I'm pretty nervous. I DO NOT want to have a hysterectomy.

I could possibly have results by the end of the week. Keep your fingers crossed for me.

8/26/09

A couple weeks ago, I went in for my pap smear and colposcopy (cervical biopsy). Soon after my dr. had called and told Jeff that the results of my biopsy seemed ok. Well today he called and said he got the results of my pap smear back and it is showing a high grade lesion, so I have to go back in within the next 2-4 weeks to have another colposcopy to make sure there isn't something going on that we are missing. Can somebody please cut me a break?!

2/2/09

The results are in!!!!

After worrying for days I finally can breathe easy again....my biopsies came back good. I will go back to get things checked again in 6 months. We will keep an eye on those abnormal cells to make sure they behave themselves, but I'm so relieved!

1/29/09

Just thought I would give a little update as to what has been going on lately... My pap smear that I had done in November came back abnormal with the presence of endometrial cells, so my doctor had me schedule an appointment to come in and have a colposcopy, a cervical biopsy, and an endometrial biopsy. With everything going on with my mastectomy and recovery, I just went for the procedures on Tuesday. I wasn't nervous before I went in, but I came out rather unsettled. Although I knew they were testing me for cancer, it almost made me cry to hear them say this aloud. They said they should have the results by Friday. I really hope that is true. I've been on pins and needles since the appointment. I just can't stand the thought of another doctor sitting across from me, saying those dreadful words..."I'm sorry, but you have cancer." I still to this day can hear the radiologist's voice who diagnosed me saying that very thing. I don't think that will ever leave my mind. Ugh!

Okay now, moving on....today I had an appointment with my surgeon. He drained some fluid that had accumulated in my armpit area and then wrapped me with an ace bandage again. He said I needed to leave this on another two weeks until I see him again. We didn't schedule my port insertion surgery, because he wants to resolve this issue first. So in two weeks I will go back for a recheck, and then go straight from that appointment over to see a lymphedema specialist, who will do some massage to get the fluid moving. I want to do everything I possibly can to avoid getting lymphedema.

Well, that is about it for now. I will update again after I get my biopsy results back. Let's hope it is good news.