Surgeries

My surgery was scheduled for Friday February 7th 2014. Mike drove me to the hospital and I tried to remain calm, but who was I kidding - I am a big wimp so I was really freaking out. Not about what they were going to find out, but more about what if I didn't wake up from the anesthesia/what if I did wake up from the anesthesia but during the operation/ what if I threw up all over the place like I did during my c-section/blah blah blah. To calm myself down I was telling myself that thank goodness I was not sitting in a Polish hospital and that everyone around me was speaking English at least! I was a little relieved though, thinking that this stupid mass was finally coming out. Everyone was so nice to me and Dr. Reilly came in and introduced himself  - he was actually from Dublin so he and Mike chatted for a bit and turns out they knew some of the same people. Small world. Anyway, Dr. Reilly said "Well all right, we're taking out both of your ovaries today, let's get going!"HUH?! Mike and I exchanged nervous glances and I explained to Dr. Reilly that it should only be my right ovary, and he scurried off to get something from somewhere. Oh my God, I didn't need this stress right now. He came back after about 15 minutes and then said "Yep okay, time to take out the right ovary!" He had the ultrasound report in his hand, and he explained that the doctor who read the ultrasound is one of the best in the country and that she thought it was benign, but cancer could not be ruled out so that is why they were operating. He completely calmed Mike and I down and they wheeled me off to the operating room. 

Looking way too happy to be going into surgery

The next thing I knew, my mother and Mike were sitting next to me in the recovery room. It's all a bit fuzzy but I can clearly remember the look on Mike's face when I asked him how it went so I knew something was wrong. He told me the tumor was malignant, but he and my mom explained that Dr. Reilly told them it was caught so early that it was Stage 0, that it had not spread, and everything was totally fine and there was nothing to worry about. They told me it was called a Granulosa Cell Tumor, an extremely rare type of stromal cell ovarian cancer. So, it wasn't the scary much more common epithelial type. I think they even told me that Dr. Reilly had said as soon as I felt better I could fly back to Poland. After a couple hours in recovery we went back to Braintree. I think it took the entire weekend for what was going on to really sink in. I had so many questions for the doctor - did this mean I had cancer? How could I just get on a plane and go back to Poland?? I tried to stay away from searching too much on the internet, but I did search for 'Stage 0 cancer' but never found anything. I was so confused! So the first thing Monday morning I called Dr. Reilly's office and thankfully they put him right on the phone. And the first thing he said to me was "Well, you have cancer! But don't worry, it's a very slow growing one that we caught early and I am almost certain that you will die of old age in your bed before you die from this" or something along those lines. He told me they were going to arrange to have me seen by an oncologist at Dana Farber to explain everything better to me and I somehow was able to get an appointment a few days later.

I met with a surgeon there named Dr. Muto. He was really nice and soft spoken but he didn't quite reassure me as much as Dr. Reilly had. He told me my cancer (GCT), was extremely rare (only 3-5% of women get it) so there isn't a lot of information or research available on it. The good news was that it is slow growing and has a good prognosis, and there are blood tests to check to see if it may be coming back so it can be monitored easily. The bad news was that it does have a tendency to recur a long time down the road....10 or even 15 years from now, so I will have to keep on top of it for the rest of my life (unlike the 'standard' ovarian cancer where a person usually is considered in remission if they go 5 years without a recurrence). He thought there was a very good chance that it would never come back (90% maybe?) but said that if it did come back, it is really hard to treat, i.e. chemotherapy isn't too effective. He also explained that because Dr. Reilly was not an oncologist, he did not perform all of the necessary tests to ensure that he had gotten all of the cancer. He should have done a 'pelvic wash' to test for any microscopic cancer cells in my abdomen, plus a biopsy of some other organs in there. So, he was recommending that I have another surgery to do all of this. Say what?!? He also explained that because of the size of the tumor and the fact that it was a laproscopic surgery with very small incisions, Dr. Reilly had cut the tumor into pieces before removing it, which could have caused the cancer cells to escape and therefore I was staged at 1C (the same staging for a ruptured tumor, or a tumor that has spread to the outside of the ovary). He told me he would take my case to the Tumor Board, which is a group of some of the best oncologist in the country, to see if they all agreed that I should have another surgery.  Of course the Tumor Board only meets every other week, so I had to sit and wait for their decision. Great! I was a bit annoyed that I was potentially going to have to go through another surgery, but I felt like it would be best to make sure everything was okay.

Waiting a week was a bit tortuous but during that time I pretty much came to terms with the fact that I was going to have another surgery. Finally I received the call from Dr. Muto and he told me that the Tumor Board had all agreed that another surgery was the best thing to do. Ugh, I was really going to have to go through all this again! The thought of them cutting open my still-sore bellybutton again was really giving me the heebie-jeebies, but as Mike would say, I'd just have to battle through it.

My surgery was scheduled for March 20th and once I got to the hospital I was trying to remain calm but this time around felt much different. After I got all prepped I was having a bit of a panic attack waiting for Dr. Muto to come in, so I asked the nurses to give me something to calm my nerves but they wouldn't give it to me until he came in and talked to me (they wanted to make sure I was coherent!).  Once he came in and started talking to me and walking me through what he was going to do I just completely broke down. I felt like a huge baby, but I just couldn't pretend that I wasn't scared about what was happening, that I was about to be wheeled back into the operating room to see if had any more cancer. While my first surgery felt more like a victory for me, finally getting what I wanted, this one was more scary as I was terrified of the results. As soon as Dr. Muto was finished talking they shot me with something and that is the last thing I remember.  I woke up in the recovery room and Mike told me that Dr. Muto had said everything looked great but obviously they had to wait for the official pathology report which would take about a week. Great, more waiting! Once I got some food into me we were back on the road to Braintree a few hours later.

My recovery from this surgery was much like the first, although a bit more painful. I could really tell that Dr. Muto had a good look around because I was sore everywhere. The worst part was I was really uncomfortable because during a laproscopic surgery they have to inflate your abdomen with lots of air so they can see what they are doing, so I felt like an inflated beach ball. I couldn't even lay flat in the bed so the first night I had to try to sleep sitting up in a chair, and it was hard to breathe because the pressure was on my diaphragm. It was pretty unpleasant but luckily it only lasted a day or two, and the other pain was manageable with the super Advil that they gave me. Eventually I was back to a somewhat normal functioning person, napping away the effects of the anesthesia.

Finally six days later I got the call from Dr. Muto. It was March 26th, the anniversary of Mike's dad's death. Apparently big Jack was my guardian angel watching over me because that was the day that Dr. Muto told me that all my biopsies and washes had come back clean, so it was official that there was no more cancer. Hallelujah!! However, it wasn't time to celebrate just yet. He explained that since my tumor had been cut open and I was staged at 1C, he was referring me onto a medical oncologist. I guess it didn't really sink in at the time, but when I showed up at my next Dana Farber appointment with a Dr. Campos, she immediately starting talking to me about the different options for chemotherapy. Say what?? I was so confused - I had just gotten the news that I didn't have cancer, so why on Earth would I have to go through chemo? Well now that I know a little more about it, apparently chemo is most effective for GCT when used at first detection of the cancer, to prevent a recurrence. So, if one tiny cancer cell had escaped when my ovary was cut open, going through chemo would have hopefully killed it before it could develop into a recurrence. Unfortunately, if I wait to use chemo until after the cancer recurs (if it does), the chemo is much less effective then. I think I was just so overwhelmed with everything at the time that all of this wasn't so clear to me back then. But to be honest, I don't think it would have made much of a difference. Mentally, I don't think I could have put my body through that knowing that there wasn't a big tumor inside me that they were trying to kill.

After I met with Dr. Campos I talked to Dr. Muto, and he told me that he had met with the Tumor Board again to discuss my surgery results and while some of them felt that chemo was the next best course of action, he was pretty confident that my tumor had been totally encapsulated (I remember him telling me that it looked like a beautiful, clean cue ball, with no signs of disease on the outside). So, the only reason I was staged 1C was because it was cut open, so really in his mind he was thinking I was a true stage 1A and chemo is not recommended for that stage. This made me feel better and I was totally happy with my decision not to do it. 

Happy Cancerversary To Me

Seeing as my 2 year "cancer-versary" just passed on February 7th, I figured I would start to blog about my situation in case anyone wants to know what is going on with me health-wise. Plus it will be good for me to keep a record of everything because I feel like I am all over the place trying to keep track of things between doctors visits in Boston and in Poland.

In February 2014 I was diagnosed with Stage 1 ovarian cancer. Probably a year before my diagnosis, I had noticed that my menstrual cycle was getting longer and longer. I considered for a bit that maybe I was approaching menopause, but I was only 42 at the time so I wasn't sure it was possible. Every visit back to Boston I would have a check-up with my ob/gyn, Dr. K, so I had mentioned it to her and she assured me it was nothing to worry about. When I asked about the possibility of early menopause, she ordered a blood test for me and sent me on my way. I got the results right before I went back to Krakow, and everything appeared to be normal. The next few months after returning to Poland my cycles were even longer. One month it completely disappeared. Being the Nervous Nelly that I am, I started searching the internet and while I never saw that my symptoms were directly related to ovarian cancer, my searches kept bringing me to ovarian cancer webpages. I didn't have any of the symptoms that were described though - bloating, felling full quickly after eating, increase in the urge to urinate, abdominal pain. I mean, I never really had a washboard stomach and who didn't have to pee all the time after they had a kid?? I decided to find a doctor anyway just to be safe and ease my worries. I got a recommendation from a friend here and made an appointment for a few weeks later. When I told Dr. Paulina my symptoms she thought it sounded like I might be suffering from a case of premature ovarian failure. Nothing to worry about she told me, and started to examine me. As luck would have it, and the reason we caught it so early, is that she actually had an ultrasound machine in her office. If I had been in Boston, this never would have happened.  I could tell by the way she was looking around on the screen that something was wrong - she told me she saw something and her English wasn't great so when she was explaining it to me she first said she saw a mass, then said it could be a big cyst, then when she called it a tumor I slowly started to panic.  She reassured me by telling me it didn't look suspicious because it was perfectly round and squishy, not hard like a cancerous tumor. But to be safe, she sent me next door to have blood tests done to rule out cancer (I found out later that her mother had died of ovarian cancer so this is why she was especially cautious). I went right next door to get my blood drawn and I just sat there in shock in the waiting room. I tried not to freak out but my head was spinning. Of course it was a Wednesday and they told me the results would not be ready until Monday - were they serious??  I had no idea how I was going to get through the next few days wondering if I had ovarian cancer, a cancer that I happened to know had a terrible prognosis.  I got into my car and immediately drove to Mike's office, calling him in tears on the way there. We sat in the car and he tried to reassure me that everything would be okay, and he suggested I call Dr. Ted, our primary care physician here. Some of you may know that I am quite the hypochondriac, so I was Dr. Ted's best customer and he had gotten to know me pretty well. I called him and he told me to come in on Friday with the ultrasound images. When I went on Friday he agreed that the mass did not look malignant, and because he knew that I was going to freak out the entire weekend waiting for my blood test results,  he called the blood lab while I was sitting there and was able to get one of the results for me - the CA-125 (the standard ovarian cancer test) which was completely normal. Phew! Mike and I breathed a sigh of relief, albeit a small one. Dr. Ted suggested I go to see another doctor for a second opinion, and he knew one who spoke perfect English. Thanks to Dr. Ted I was able to get an appointment with him on Monday. In the meantime, Dr. Ted was able to call a different blood lab where he found out my other results were ready but I had to go to the lab to pick them up.  Mike and I got in the car and drove there and the nurse just handed me the slip, no explanations or anything. My heart was pounding out of my chest as I tried to decipher the results, but thankfully they were both in the normal range. Phew, another sigh of relief! And thank God for Dr. Ted for sparing me the agony of waiting for the test results over the weekend. I called Dr. Paulina that afternoon and told her the results and while she thought it was good news, she said she had consulted with her boss and they both thought it best that I have the mass removed just to be safe, since it was on the large side. I never really considered having the surgery done in Poland, not because I didn't trust her (because, hello, she was the one who had caught this!) - but I knew that none of the nurses would speak English and she told me I would have to stay in the hospital for about 3 days. And, I have been inside a few Polish hospitals and they look like they have not even had a new coat of paint since WWII. Besides, Mike was flying back to Boston that following week so it made total sense to go with him. I decided to keep my appointment for the second opinion on Monday anyway, and the new doctor, Dr. P, assured me immediately that it was just a benign cyst and that my body would probably rid itself of it on it's own. However, because of the size of it, I should come back in a month to have it re-measured.

Mike and I went home feeling relieved, but I was still uneasy knowing that I had a big mass growing inside me. When I thought more about it, if it had been growing as long as I had been having problems with my cycle, I didn't really think my body would be able to rid itself of it in a month, if it hadn't been able to in over a year. All I kept thinking about was that one doctor thought I should have surgery, and I just knew that that was going to be the only way I would be able to truly relax.  I was leaning more and more towards the option of going to Boston with Mike.

I emailed Dr. K in Boston as soon as I could - I tried calling her but of course they moved to a new building and she could no longer make international phone calls to call me back. I sent her the ultrasound images and the blood test results through email and told her that my Polish doctor was recommending surgery so I would come back with Mike if she would agree to operate. She told me to relax, not worry, and that I should just wait to see her when we were back in April. Huh?? No way. I couldn't relax for four more months! I called Mike that day and apologized because I knew booking last minute flights were going to be really expensive, but this was really the only way I could get peace of mind. We both kind of laughed thinking how Dr. K was going to react when I showed up in her office after she had told me not to come (she is really a nice lady, and she too is familiar with my worrying!). I said I totally did not care if I was flying all the way back there for no reason but I just had to do it to make myself feel better. I was able to schedule an appointment with Dr. K for that next Monday, but of course they needed an ultrasound done in Boston first, and I needed a doctor's referral to get one. I begged and pleaded my case and after a few phone calls I was able to get an appointment for an ultrasound the morning before my appointment.

We flew back to Boston and I had my ultrasound. The doctor came in to see me after reading the results and she said that while it did not look malignant, she would recommend surgery to have it taken out just to be safe. Yes! I was so happy to be able to tell Dr. K that I actually did need surgery after all, and I was relieved that our trip back to Boston wasn't a total waste. When I saw Dr. K she was shocked, but she sent me out to the scheduling coordinator and told me that a  Dr. Reilly in their practice handles all of these surgeries and that he would be performing it. I went to the office and the assistant got me in for that Friday (February 7th). Then it hit me - Oh my God I have to have surgery! It never even dawned on me to ask to have an oncologist perform the surgery, just in case....

Grandmas and Grandpas

Yesterday Jack went to a birthday party at a skating rink. He cried almost the whole way there, saying how much he hated to ice skate, even though he has only tried it once back in Dublin and probably didn't even remember it. When I picked him up after the party, he was having so much fun that he didn't want to leave, and he was begging me to stay so he could keep skating! I really wasn't dressed for an ice rink, so I promised him we would go somewhere today. It turns out some friends of ours were going skating at a hotel near our house that has a pretty home-made looking rink, but they had skates to rent so it worked out perfectly. Unfortunately they didn't have those cute penguins that beginners can hang on to for balance, but Ava eventually go the hang of it and Jack was whizzing around the place (while also falling a lot). It ended up being a lot of fun, and now Jack wants to learn how to play ice hockey, so we will have to try to find a place to do that. While we were skating I saw a grandma there with her grand daughter and I was totally impressed that she was cruising around on ice skates! Then it made me realize that Polish old people really put the American elderly population to shame. Ava and Jack's school is out in the boondocks, near a lot of farmland. Whenever I drive to or from school, I am amazed at the number of old people out doing manual labor or just being active. Driving tractors, walking horses, pulling wheelbarrows full of stuff, walking up hills carrying big bags of groceries. In general just out and about with no canes in sight.  Or they are riding bikes everywhere - we saw this a lot in Ireland too. They are definitely a hearty breed - but they could take a few lessons in politeness and common courtesy from Americans. They rarely ever smile, and they are always cutting in lines - at the grocery store, at the post office, you name it. Just the other day an old guy raced from his car to beat me into a pharmacy and let the door slam in my face. Ah well, they still totally impress me!

Here is the babcia on skates earlier today

and a little video I took on one of our drives to school - hard to actually see him, but I would say he was at least 70 years old. You go grandpa!!!

More Christmas

More photos from Christmas:

Up at my mom's, my brother and Lin (and their dogs!) and my sister and Ethan and Jade were all there.

Chris with Louie and Charlie

Dog lover!

Our annual post-Christmas hike through the woods. All the kids complained  that they didn't want to take the long way this year. I was just praying we didn't bump into the local bear

Silliness with Lin

Cousin time!

The Henna Lady bought me some extensions - lol!

Happy to get to spend QT with my brother and sister. I usually only get to see them at Christmas time

They look too happy to be saying good-bye

A few days after we got back to MA we finally made it down to our place in Falmouth. I wish we could have stayed longer, but we celebrated Mike and Maureen's birthday on the 30th, then New Year's Eve we went out for Chinese food then played Just Dance on the new XBOX

Happy 2016!

We headed back to Braintree after New Year's

Ava getting in her Coopah time

Spending time with her godfather. By the looks of it, this was John's first selfie!

More cousins

Before we knew it, we were back at Logan heading back 'home'. Unfortunately we did not get another upgrade to Business Class this time. For some reason they put Mike and I together in the exit row, so the kids had to sit behind us. Made no sense to me and we couldn't change our seats because we were in the last now and it was too complicated. Thankfully the kids are seasoned travelers and didn't need much from us.

I specifically left our tree up in Krakow, in the hopes that the whole house would smell like Christmas when we got back. Sadly this was not the case. We were just greeted by our sad, neglected tree that didn't smell at all : (

We got back on a Tuesday and since Wednesday was a holiday in Poland (the Epiphany), Asia was at our house when we got there - which also meant that our Stella was waiting for us! Despite our excitement to see her, she wanted nothing to do with us because she was mad and gave us the cold shoulder for most of the day. Luckily she warmed up by the following day and spent most of it snuggled in my lap.

Stella!

Christmas Continued

Okay I'm really slacking off with this blog! For whatever reason I have just not had time to sit down and write. So this will be a quick one so I can share pictures from our Christmas break. Since I left off saying that I lost a bunch of things, it turns out I left my sunglasses in our house in Falmouth, and when the renters after us returned our rental car, my iPad was still inside!! I was so happy.
Anyway, here are some pics

Twin sandwich

North End dinner with the Walls, Goonans, McNallys, Duffys and Mudd

Mike and the boys

That Saturday night Mike and I stayed at a hotel in town and the kids and Nina met us there the next day to go see the Boston Pops

Chilly but beautiful weather down by the water

Then it was on to visit my dad and Mickey in New York...

Jack loved my brother's rental car

With Opa and Grandma's dog Mandy

Took a stop to see my friend Leigh on the way back to Braintree...

Playing silly games with Leigh and Emma

Trying to play the didgeridoo

Back in Braintree - trying out my new selfie stick!

Christmas Eve

All the grandkids together!

Christmas morning - Jack couldn't believe we got an XBOX!

Christmas Day-back on the road to NY, this time to see my mom and Bruce - it was warm enough for shorts!